Information-seeking Experiences Research Articles

Challenges in Obtaining and Seeking Information Among Breast Cancer Survivors in an Asian Country: a Qualitative Study.

Breast cancer survivors on adjuvant endocrine therapy (AET) have distinct information-seeking experience compared to those in the diagnosis and intensive treatment phase. This study aimed to understand the challenges in obtaining and seeking information among Malaysian breast cancer survivors. We conducted semi-structured, one-to-one interviews among patients using AET from two hospitals and a local cancer organization. Interviews were conducted until theme saturation was achieved (N = 25). Interviews were de-identified, transcribed verbatim, and analysed using thematic analysis. To ensure rigor, coding was conducted through regular discussions between two researchers and the findings were shared with several participants after analysis was completed. Three main themes were identified: limitations in the healthcare system, pitfalls of seeking information online, and limited information from local sources. The participants perceived that their information needs were not met by their healthcare providers and sought information on the Internet to complement their information needs. However, they were faced with risks of misinformation, information overload, and unethical promotion of health products. Those with limited English proficiency had difficulties in accessing quality information, and suggested that there should be more content created by local health advocates in local languages, with information that is tailored for local cultures. As the Internet has become an important medium of health education, healthcare providers and patients should be equipped with the skills to share and search for information online. Digital health literacy needs to be incorporated in patient education modules to create a more informed and empowered patient community.

Women's Health Information-Seeking Experiences and Preferences for Health Communications on FDA-Regulated Products: A Qualitative Study in Urban Area.

A key part of any effort to ensure informed health care decision-making among the public is access to reliable and relevant health-related information. We conducted focus groups with women from three generations across the Baltimore-Washington metropolitan area to explore their information-seeking motivations, perceptions, challenges, and preferences regarding three FDA-regulated products: drugs, vaccines, and medical devices. The youngest generation discussed seeking health information for their children; the other two sought information for their own needs. All participants noted that finding health information appropriate to their reading level was a challenge, as was identifying reliable sources of information. All generations identified in-person and live interactions as their preferred method of communication and health care providers as their preferred source for information. All three generations recognized the usefulness of websites, and the two older generations acknowledged the advantages of brochures. Our findings suggest approaches the FDA could consider to improve communications: (a) supporting in-person and live health information interactions; (b) leveraging the agency's standing with the public to highlight it as a leading source of validated health information; (c) increasing the FDA website's visibility in internet searches and making its navigation easier; and (d) using multi-pronged approaches and media for various audiences.

Abortion information-seeking experiences among women who obtained abortions in Kinshasa, DRC: Results from a qualitative study.

Little is known about the process of seeking information related to abortion care options among women in the Democratic Republic of Congo (DRC). Understanding how women obtain information can help identify opportunities for intervention to increase awareness and use of safe pregnancy termination options. Using qualitative data collected from women in Kinshasa, DRC who reported having an abortion in the last 10 years, this study aims to determine how women navigate obtaining information about their options for abortion and the role of their social network in their information-seeking processes. Data for this analysis come from a mixed-method study of abortion in Kinshasa conducted from December 2021 to April 2022. Fifty-two qualitative interviews followed a structured interview guide, including open-ended questions and probes, developed by a multidisciplinary team of researchers in Kinshasa and the United States. Inductive thematic analysis was conducted using Atlas.ti, and a thematic analysis matrix was used to describe the major themes and subthemes. Thematic analysis revealed two main themes with nested subthemes. The first and most salient theme highlighted the highly selective and narrow information search process women engaged in, involving no others or very few individuals (e.g., partners, women in one's community, or providers) that the pregnant woman chose strategically. The second theme revealed the heterogeneous and often stigmatizing nature of these interactions, including attempts at deterrence from many sources and information of varying completeness and accuracy. While the recent liberalization of the abortion law in the DRC is essential to improve access to safe abortion, public health gains will not materialize unless they are accompanied by community-level actions to raise awareness about the legality and availability of safe abortions services, including medication abortion pills for safe self-managed abortion.

Effect of interface layout design of a public library website on information-seeking experience for elderly people

PurposeTargeting the common functions of the Zhejiang Library website, elderly individuals were invited to complete six experimental tasks on the improved website interfaces, and subjective data (PAD emotion scale and usability evaluation) and objective data (eye movement data) were recorded to verify the effects of graphic layout and navigation position on the information-seeking experience of elderly individuals.Design/methodology/approachThis study analyzes the effect of the graphic layout and navigation position of the Zhejiang Library’s website interface on the emotional state, perceived usability and information-seeking time of elderly individuals, with the aim of providing guidance and suggestions for the elderly-oriented reform of the public library website.FindingsThe experimental results show that the graphic layout has a significant effect on the emotional state and perceived usability of elderly individuals, and the navigation position has a significant effect on the information-seeking time; the interaction between graphic layout and navigation position exerts a significant effect on the information-seeking time of elderly individuals. The eye movement data show that elderly individuals have a better information-seeking experience when the top navigation bar and image-text matched arrangement are used for the interface layout.Originality/valueThis study adopts a new approach combining subjective data and eye movement data to evaluate the effect of the public library website’s interface layout on the information-seeking experience for older people. The findings can provide a theoretical basis and methodological support for the elderly-oriented reform of public library websites. They can also provide scientific design suggestions for age-friendly interface layouts of other Internet products and service applications.

Health information-seeking experience in people with head and neck neoplasms undergoing treatment: a qualitative study.

To describe the health information-seeking experience and its influencing factors of people with head and neck neoplasms undergoing treatment. This was a descriptive phenomenology study. Participants were recruited by purposive sampling. The semistructured interviews and all observation results were recorded. The data were analysed using Colaizzi's method. Fourteen participants were selected. We identified four themes that illustrate factors that influence the health information-seeking behaviour of participants: patients' awareness of health information needs, patients' competence, doctor-patient communication, and online advertising interference. We also determined the value of different types of information and patients' information needs and sources. These findings can help professionals understand patients' behaviours and think about how to deliver practical information support in a network environment to guide patients in continuous information seeking while taking specific factors into account.

We’re here too: child health information-seeking experiences and preferences of Red River Métis families – a qualitative study

BackgroundRed River Métis families need access to meaningful and appropriate resources when their children are sick. At the invitation of the Manitoba Métis Federation (MMF) to partner in this research, our aim was to understand Red River Métis parents’ experiences and preferences for seeking child health information when their child is acutely ill, to inform the adaptation of existing parent resources.MethodsA qualitative descriptive approach underpinned by a participatory paradigm guided this study. Semi-structured interviews were conducted with 19 Red River Métis parents and Elders via Zoom or telephone. An inductive thematic analysis approach was used to explore patterns and themes across the data.ResultsAnalysis generated four themes: (1) We’re here too; (2) We are not all the same; (3) Finding trustworthy information; and (4) Information needs to be widely available. Red River Métis pride was prominent in the results. Parents provided tangible ways to modify existing parent resources, including adding information on how to access Elders, healers and/or traditional medicines and showing different family structures, transport, living situations, Métis names, and incorporating Métis languages. While most parents reported looking for child health information online, they also stressed the need to provide multiple options, including information sheets, recognizing that parents seek information in different contexts. Parents also emphasized the importance of accessible, safe spaces to find child health information, including local schools, community centres, healthcare organizations and the MMF.ConclusionThere is a lack of child health information created specifically for Red River Métis families. The development of this information can support their information needs and preferences and the ongoing efforts to revitalize Red River Métis culture and language. Study findings will inform the adaptation and dissemination of existing child health resources to ensure they reflect Red River Métis parents’ information needs and preferences. This research is a critical step in addressing an identified need for Red River Métis families to have culturally relevant and meaningful child health resources, and in the pursuit of equitable care for all children in Canada.Trial RegistrationN/A.

HSD62 The Emotional and Information Seeking Experience of Locally Advanced Cervical Cancer: Qualitative Research Findings from Brazil

HSD62 The Emotional and Information Seeking Experience of Locally Advanced Cervical Cancer: Qualitative Research Findings from Brazil

OPERA: Harmonizing Task-Oriented Dialogs and Information Seeking Experience

Existing studies in conversational AI mostly treat task-oriented dialog (TOD) and question answering (QA) as separate tasks. Towards the goal of constructing a conversational agent that can complete user tasks and support information seeking, it is important to develop a system that can handle both TOD and QA with access to various external knowledge sources. In this work, we propose a new task, Open-Book TOD (OB-TOD), which combines TOD with QA and expands the external knowledge sources to include both explicit sources (e.g., the web) and implicit sources (e.g., pre-trained language models). We create a new dataset OB-MultiWOZ, where we enrich TOD sessions with QA-like information-seeking experience grounded on external knowledge. We propose a unified model OPERA ( Op en-book E nd-to-end Task-o r iented Di a log) which can appropriately access explicit and implicit external knowledge to tackle the OB-TOD task. Experimental results show that OPERA outperforms closed-book baselines, highlighting the value of both types of knowledge.

Transnational Habitus as a Configuration of Dispositions: Chinese International Students Navigating Online Information

This study investigates the impact of transnationalism on Chinese international graduate students’ literacy practices in online information seeking. Using phenomenological interviewing, weekly diaries, and focus group data, the study found that these students actively engage in recursive, dynamic, and flexible online information-seeking literacy practices that transcend linguistic, digital, and unconventional cultural boundaries due to their multilingual capacity and unique social positioning in the online information landscape. This study reveals that these students’ transnational habitus in online information seeking manifests as a configuration of dispositions rather than one fixed transnational habitus. These findings underscore the importance of understanding multilingual international students’ online information-seeking experiences, literacies, and challenges to inform engaging, transnationally inclusive, and culturally relevant information literacy curricula and instruction in U.S. higher education institutions.

Developing and maintaining health literacy: A continuous emotional, cognitive, and social process for parents of children with epilepsy—A qualitative study

Childhood epilepsy is often complicated by neurobehavioral comorbidities, and parents are expected to actively engage in managing the condition. Insufficient parental health literacy (HL) has been associated with reduced health outcomes for children with epilepsy. Little is known about the parents’ experiences of information seeking, social support, navigating the healthcare system, and interactions with healthcare professionals and how these skills may contribute to the development of sufficient HL.This study explored parents’ experiences of their caregiver responsibility and the development of their HL in relation to caring for their child with epilepsy. Ten parents of children under 12 years of age with epilepsy were purposedly sampled and interviewed individually, using semi-structured interviews. The interviews were analyzed using qualitative content analysis, in line with Graneheim & Lundman.The analyses resulted in three themes, each comprising two sub-themes. The themes were: (1) Alone with the responsibility, (2) The combat for information and support, and (3) Developing vigilance and distrust in system competence. Lack of flexibility in healthcare services, insufficient multidisciplinary collaboration, and unclear treatment provider responsibility made the parents feel alone in the caregiver’s responsibility. Poor local provider competence related to childhood epilepsy was a barrier to developing sufficient HL. A trusting relationship with professionals and timely access to competent health services were facilitators for developing HL. Higher HL made the parents more critical for the healthcare services, which triggered vigilance and reduced their trust in the professionals’ information.For the parents, developing and maintaining HL was a continuous emotional, cognitive, and social process. Health information and care support need to be adjusted to the severity of the child’s condition, the resources are available, and the parent’s HL. The results of this study may contribute to the development of future interventions for strengthening parental HL in the childhood epilepsy context.

Do Systemic Inequities Lead to Differences Between Information Behaviors of Older Adults in the USA and India During the COVID-19 Pandemic?

A Review of: Lund, B. D., & Maurya, S. K. (2022). How older adults in the USA and India seek information during the COVID-19 pandemic: A comparative study of information behavior. IFLA Journal, 48(1), 205–215. https://doi.org/10.1177/03400352211024675 Objective – To investigate and compare the information-seeking behaviors of older adults in one developing and one developed country during the COVID-19 pandemic. Design – Structured interviews via Zoom (video), telephone, or email. Setting – Two towns with moderately large populations (about 300,000), one in eastern India and one in the Midwest of the USA. Subjects – Sixty adults ages 65 and older, 35 in the India cohort and 25 in the USA cohort. Methods – The researchers recruited participants from the communities in which their respective institutions are located by using online advertisements in Facebook groups, local (print) advertisements/flyers, and word of mouth. The ten interview questions were informed by Dervin’s (1998) sense-making methodology and sought to identify a specific information need, behavior to address the need, and the influences on and outcomes of the behavior. They conducted the interviews in July and August of 2020, translated the questions into Hindi for Hindi-speaking participants, and analyzed responses using qualitative content analysis. Within each of the resulting themes and categories, the researchers compared the responses of American and Indian participants. Main Results – The researchers found many significant differences between the information behaviors of Indian and American participants. Some of the biggest differences were in the information needs expressed by the participants, as well as the sources consulted and the reasons for consulting those sources. For example, when asked about the types of information needed, 77% of Indians focused on a “COVID and health-related” information need, as opposed to only 33% of Americans. And 37% of Americans indicated information needs related to “political and economic issues,” especially the upcoming 2020 election, as opposed to only 3% of Indians. When asked about sources, 28% of Indians consulted television, compared to only 6% of Americans. Web-based sources were generally used more by Americans, with 31% of Americans consulting websites, compared to 13% of Indians. In regard to their reasons for consulting a source, 28% of Indians chose a source based on availability, compared to only 9% of Americans. And 32% and 36% of Americans chose information based on ease and familiarity (“I know how to find it”), compared to only 18% and 13% of Indians, respectively. Only 3% of Indians met all their information needs, as opposed to 43% of Americans, and Indians were more likely to stop searching after encountering barriers. Americans had more confidence in their information behavior overall, and only 32% of Americans were interested in taking a class on how to find information, as opposed to 97% of Indians. Conclusion – Older adults in developing and developed countries described very different information-seeking experiences. The disparities between the types of information sought, sources consulted, and barriers encountered highlight not only cultural differences, but also systemic inequities that exist between the information infrastructure of the two countries, especially as concerns access to computers and the Internet. The study points to areas for future improvement, including the need for interventions such as information literacy instruction.

Online health information-seeking experiences during the COVID-19 lockdown among social media users in four countries

Online health information-seeking experiences during the COVID-19 lockdown among social media users in four countries

'Wanting no regrets': Parental decision making around selective dorsal rhizotomy.

Selective dorsal rhizotomy (SDR) is an irreversible neurosurgical procedure used to reduce spasticity while aiming to improve gross motor function for children with cerebral palsy (CP). Little research has explored the complexity of parental decision-making experiences surrounding SDR surgery and required rehabilitation. The aim was to explore parental experiences and expectation in the decision-making process around the SDR operation, physiotherapy treatment and outcomes. Qualitative methods using in-depth, semi-structured interviews were used. Eighteen parents (11 mothers and 7 fathers) participated whose child had SDR and completed 2-year post-operative rehabilitation. Data were analysed using thematic analysis. Decision making involved an interacting process between the 'parental information seeking experience', 'influence of professional encounters and relationships' and 'emotional and social aspects'. Despite underlying uncertainties about outcomes, parental drivers of expectations and aspirations for their child preceded and sustained this decision-making process. A foundational narrative of 'wanting no regrets' resolved their decision to undertake SDR. Outcomes did not always match expectations, and parents moved away from a position of idealism, which was driven in part by parental information seeking including overly optimistic media representation. Universally, parents expressed they had 'no regrets' on their decision, yet many felt a mismatch between expectation and outcomes of SDR surgery. A greater understanding of the complex nature of SDR decision making is required to help improve family preparedness and provide support from clinicians to enable balanced discussions in parental decision-making.

Stroke Survivors and Their Family Caregivers' Experiences of Health Information Seeking: A Qualitative Study.

ABSTRACTBackground: Stroke is a significant and unpredictable event that affects physical and mental functions. A useful approach to returning to a normal life is to seek out health information. This study aimed to explore the experiences from health information seeking in the stroke survivors and their family caregivers.Methods: This study was carried out using qualitative content analysis. Participants included five stroke survivors and fifteen family caregivers who were selected purposively from the Rofideh Rehabilitation Center and private physiotherapy centers in Tehran. Data were collected from semi-structured interviews. Data analysis was performed using Graneheim and Lundman’s method manually in Word software. Sampling was carried out in 2021.Results: Two main categories were extracted 1): adapting and learning resulting from awareness including optimization of living environment and disease management, and 2) fear and inquietude on the information way including confused and insolvent in receiving information, and doubts about the accuracy of information.Conclusion: The health information seeking created adaptability and relative stability in some stroke survivors and their family caregivers. However, in others, there was still a sense of anxiety and uncertainty. Thus, understanding health information seeking experiences helps health policymakers and administrators to provide information and training based on evidence and individual needs of the client and family.

The effects of worry, risk perception, information-seeking experience, and trust in misinformation on COVID-19 fact-checking: a survey study in China

Health misinformation is a serious problem that can cause confusion and risk-taking behaviors, undermining public health efforts. Fact-checking has been highlighted as an effective tool for coping with the challenge of misinformation. However, few studies have examined the factors influencing individuals’ health fact-checking behaviors. Using the comprehensive model of information seeking, we conducted a two-wave panel survey in China during the COVID-19 pandemic and explored the underlying process that might hinder COVID-19 fact-checking. The results showed that risk perception and worry about COVID-19 triggered a negative COVID-19 information-seeking experience, which reduced COVID-19 fact-checking. Moreover, the propensity to trust COVID-19 misinformation played a moderating role, such that negative information-seeking experience had a stronger negative effect on fact-checking behaviors for people with a greater propensity to trust misinformation. This study demonstrates the dark side of cognitive and affective responses to risks and health information-seeking experiences. The findings offer important implications for future health communication initiatives to effectively promote health fact-checking behaviors.

Does Social Media Promote or Hinder Health Learning? The Roles of Media Attention, Information Discussion, Information Elaboration, and Information Seeking Experience

ABSTRACT Social media has become an important avenue for learning. However, the mechanisms underlying social media use and its influence on knowledge are not clear. Based on the cognitive mediation model, this study explored the pathways through which social media use was linked to health knowledge, taking into account different information acquisition patterns (e.g., media attention vs. information discussion), information processing (e.g., elaboration), and information seeking experience. With a cross-sectional survey conducted in China (N = 1,350), this study found that paying attention to health information on social media had a direct and positive relationship with health knowledge. However, discussing such information was negatively associated with knowledge. Media attention also had a positive relationship with information discussion. Both media attention and information discussion were positively related to information elaboration, which in turn, had a positive association with health knowledge. Also, the poor quality of health information seeking experience weakened the relationship between social media use and elaborative processing. This study provides important implications for health communication research and practice in the digital era.

Main COVID-19 information sources in a culturally and linguistically diverse community in Sydney, Australia: A cross-sectional survey

ObjectiveDescribe COVID-19 information-seeking experiences for culturally and linguistically diverse groups in Sydney, Australia. MethodsCross-sectional survey, translated into 11 languages; participants recruited from March 21 to July 9, 2021. Regression models identified factors associated with difficulty finding easy-to-understand COVID-19 information. ResultsAcross 708 participants (88% born overseas, 31% poor English proficiency), difficulty finding easy-to-understand COVID-19 information was rated 4.13 for English (95%CI: 3.85–4.41) and 4.36 for non-English language materials (95%CI: 4.07–4.66) (1 easy to 10 hard). Participants who were older (p < 0.001), had inadequate health literacy (p < 0.001), or poor English proficiency (p < 0.001) found it harder to find easy-to-understand English-language COVID-19 information. Those who had greater difficulty finding easy-to-understand non-English COVID-19 information were younger (p = 0.004), had poor English proficiency (p < 0.001), were university-educated (p = 0.05), and had spent longer living in Australia (p = 0.001). They were more likely to rely on friends and family for COVID-19 information (p = 0.02). There was significant variation in information-seeking experiences across language groups (p’s < 0.001). ConclusionsEasy-to-understand and accessible COVID-19 information is needed to meet the needs of people in culturally and linguistically diverse communities. Practice implicationsCOVID-19 communication efforts must involve working alongside these communities to leverage existing communication channels and tailor messages.

Fertility health information seeking among sexual minority women

To qualitatively explore and describe fertility information-seeking experiences of sexual minority women (SMW) couples using assisted reproduction. Qualitative thematic analysis of 30 semistructured, in-depth individual and dyadic interviews with SMW couples. Video conferencing. Twenty self-identified lesbian, bisexual, and queer women comprising 10 same-sex cisfemale couples (10 gestational and 10 nongestational partners) using assisted reproduction technology in the United States. Not applicable. We describe how SMW came to learn about ways to achieve pregnancy through information seeking, acquisition, appraisal, and use. Analysis revealed three primary themes. First, uncertainty and information scarcity: SMW have basic knowledge about how to conceive but uncertainty persists due to information scarcity regarding how same-sex couples navigate assisted reproduction. Second, women attempt to collect fragmented information from disparate sources. The participants discussed a mixture of formal and informal, online, textual (books), and in-person seeking, finding, and synthesizing information that ranged from reliable to unreliable and from accurate to inaccurate. Finally, persistent heteronormative communication focused on the needs and conditions of male-female couples who experienced subfertility or infertility, rather than barriers related to social constraints and the absence of gametes that SMW sought to overcome. These findings support and extend existing evidence that has focused primarily on online fertility information seeking. Our findings suggest that shifts in fundamental assumptions about who seeks assisted reproductive support and why, together with improvements in fertility-related health communication, may result in more inclusive care for this population.

Conception and understanding of PhD Students from Information Seeking and Retrieval Experience in Their Research Process: A Phenomenographic Study

Conception and understanding of PhD Students from Information Seeking and Retrieval Experience in Their Research Process: A Phenomenographic Study

Impact of language preference and health literacy on health information-seeking experiences among a low-income, multilingual cohort

ObjectiveWe examined the impact of language preference and health literacy on health information-seeking experiences in a multilingual, low-income cohort. MethodsWe administered a modified Health Information National Trends Survey in English, Spanish, and Chinese to a sample of San Francisco city/county residents. Using multivariable logistic regression analyses, we assessed how language and health literacy impact health information-seeking experiences (confidence, effort, frustration, quality concerns, and difficulty understanding information), adjusting for age, gender, race/ethnicity, education, usual place of care, health status, information-seeking behaviors, and smartphone ownership. ResultsOf 1000 participants (487 English-speaking, 256 Spanish-speaking, 257 Chinese-speaking), 820 (82%) reported at least one negative health information-seeking experience. Chinese-language was associated with frustration (aOR = 2.56; 1.12–5.86). Difficulty understanding information was more likely in Spanish-language respondents (aOR = 3.58; 1.25–10.24). Participants with limited health literacy reported more effort (aOR = 1.97; 1.22–3.17), frustration (aOR = 2.09; 1.28–3.43), concern about quality (aOR = 2.72; 1.60–4.61), and difficulty understanding information (aOR = 2.53; 1.58–4.05). Language and literacy impacted confidence only in the interaction term between Chinese-speakers and health literacy. ConclusionWe found that negative health information-seeking experiences were common in non-English speaking populations those with limited health literacy. Practice implicationsHealth communication efforts should consider both language preference and health literacy to ensure accessibility for all patients.