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Research Article

Do Hospitals Satisfy Our Healthcare Information Needs for Rare Diseases?: Comparison of Healthcare Information Provided by Hospitals with Information Needs of Family Caregivers

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References

  • Alves, R., Piñol, M., Vilaplana, J., Teixidó, I., Cruz, J., Comas, J., Vilaprinyo, E., Sorribas, A., & Solsona, F. (2016). Computer-assisted initial diagnosis of rare diseases. PeerJ, 4, e2211. https://doi.org/10.7717/peerj.2211
  • Amegashie, P. K., & Ankamah, S. (2020). Information literacy among students of the University of Ghana Business School and Ghana Institute of Management and Public Administration Business School. Library Philosophy & Practice, 4157. https://digitalcommons.unl.edu/cgi/viewcontent.cgi?article=7764&context=libphilprac
  • Anwar, M. A., & Naveed, M. A. (2019). Developments in information literacy in Pakistan: Background and research. Pakistan Library & Information Science Journal, 50(2), 7–20.
  • Barrera, L. A., & Galindo, G. C. (2010). Ethical aspects on rare diseases. Advances in Experimental Medicine and Biology, 686, 493–511. https://doi.org/10.1007/978-90-481-9485-8_27
  • Cardinali, P., Migliorini, L., & Rania, N. (2019). The caregiving experiences of fathers and mothers of children with rare diseases in Italy: Challenges and social support perceptions. Frontiers in Psychology, 10, 1780. https://doi.org/10.3389/fpsyg.2019.01780
  • Carpenter, D. M., DeVellis, R. F., Hogan, S. L., Fisher, E. B., DeVellis, B. M., & Jordan, J. M. (2011). Use and perceived credibility of medication information sources for patients with a rare illness: Differences by gender. Journal of Health Communication, 16(6), 629–642. https://doi.org/10.1080/10810730.2011.551995
  • Chae, J. (2016). Who avoids cancer information? Examining a psychological process leading to cancer information avoidance. Journal of Health Communication, 21(7), 837–844. https://doi.org/10.1080/10810730.2016.1177144
  • Chandola, T., Clarke, P., Morris, J. N., & Blane, D. (2006). Pathways between education and health: A causal modelling approach. Journal of the Royal Statistical Society: Series A (Statistics in Society), 169(2), 337–359. https://doi.org/10.1111/j.1467-985X.2006.00411.x
  • Chan, Y. M., & Huang, H. (2013). Weight management information overload challenges in 2007 HINTS: Socioeconomic, health status and behaviors correlates. Journal of Consumer Health on the Internet, 17(2), 151–167. https://doi.org/10.1080/15398285.2013.780540
  • Chatman, E. A. (1990). Alienation theory: Application of a conceptual framework to a study of information among janitors. RQ, 29(3), 355–368.
  • Chatman, E. A. (1996). The impoverished life-world of outsiders. Journal of the American Society for Information Science, 47(3), 193–206. https://doi.org/10.1002/(SICI)1097-4571(199603)47:3<193:AID-ASI3>3.0.CO;2-T
  • Cleveland, A. D., & Cleveland, D. B. (2009). Health informatics for medical librarians. Neal-Schuman Publishers.
  • Crowe, A., McKnight, A. J., & McAneney, H. (2019). Communication needs for individuals with rare diseases within and around the healthcare system of Northern Ireland. Frontiers in Public Health, 7, 236. https://doi.org/10.3389/fpubh.2019.00236
  • Dervin, B. (1977). Useful theory for librarianship: Communication, not information. Drexel Library Quarterly, 13(3), 16–32.
  • Dong, D., Chung, R. Y. N., Chan, R. H., Gong, S., & Xu, R. H. (2020). Why is misdiagnosis more likely among some people with rare diseases than others? Insights from a population-based cross-sectional study in China. Orphanet Journal of Rare Diseases, 15(1), 1–12. https://doi.org/10.1186/s13023-020-01587-2
  • Donohoe, M. T., Kravitz, R. L., Wheeler, D. B., Chandra, R., Chen, A., & Humphries, N. (1999). Reasons for outpatient referrals from generalists to specialists. Journal of General Internal Medicine, 14(5), 281–286. https://doi.org/10.1046/j.1525-1497.1999.00324.x
  • Ellis, C., Johnson, F., & Rowley, J. (2016). Promoting information literacy: Perspectives from UK universities. Library Hi Tech, 35(1), 53–70. https://doi.org/10.1108/LHT-10-2016-0118
  • European Organization for Rare Diseases. (2017). What is a rare disease? https://www.eurordis.org/sites/default/files/publications/Fact_Sheet_RD.pdf
  • Flywel, D., & Jorosi, B. N. (2018). Information literacy skills among the undergraduate students at the University of Livingstonia, Malawi. International Journal of Library and Information Services (IJLIS), 7(2), 43–56. https://doi.org/10.4018/IJLIS.2018070104
  • Gallo, A. M., Hadley, E. K., Angst, D. B., Knafl, K. A., & Smith, C. A. (2008). Parents’ concerns about issues related to their children’s genetic conditions. Journal for Specialists in Pediatric Nursing, 13(1), 4–14. https://doi.org/10.1111/j.1744-6155.2008.00129.x
  • Gavin, M. (2019). When your baby’s in the NICU. KidsHealth. https://kidshealth.org/en/parents/nicu-caring.html
  • Gooding, J. S., Cooper, L. G., Blaine, A. I., Franck, L. S., Howse, J. L., & Berns, S. D. (2011). Family support and family-centered care in the neonatal intensive care unit: Origins, advances, impact. Seminars in Perinatology, 35(1), 20–28. https://doi.org/10.1053/j.semperi.2010.10.004
  • Hannemann-Weber, H., Kessel, M., Budych, K., & Schultz, C. (2011). Shared communication processes within healthcare teams for rare diseases and their influence on healthcare professionals’ innovative behavior and patient satisfaction. Implementation Science, 6(1), 1–7. https://doi.org/10.1186/1748-5908-6-40
  • Hughes, H., Hall, N., & Pozzi, M. (2017). Library experience and information literacy learning of first year international students: An Australian case study. Communications in Information Literacy, 11(2), 302–323. https://doi.org/10.15760/comminfolit.2017.11.2.4
  • Jiang, S., & Beaudoin, C. E. (2016). Health literacy and the internet: An exploratory study on the 2013 HINTS survey. Computers in Human Behavior, 58, 240–248. https://doi.org/10.1016/j.chb.2016.01.007
  • Kerr, B., Delrue, M. A., Sigaudy, S., Perveen, R., Marche, M., Burgelin, I., Stef, M., Tang, B., Eden, O. B., O’Sullivan, J., De Sandre-Giovannoli, A., Reardon, W., Brewer, C., Bennett, C., Quarell, Q., M’Cann, E., Donnai, D., Stewart, F., Hennekam, R., … De SandreGiovannoli, A. (2006). Genotype-phenotype correlation in Costello syndrome: HRAS mutation analysis in 43 cases. Journal of Medical Genetics, 43(5), 401–405. https://doi.org/10.1136/jmg.2005.040352
  • Lassen Medical Clinic. (2015). Understanding the referral process. Dignity Health https://www.dignityhealth.org/north-state/locations/lassen-medical-clinic/about-us/press-center/understanding-the-referral-process
  • Lee, H. (2018). A comparative study on the health information needs, seeking and sources preferences among mothers of young health children: American mothers compared to recent immigrant Korean mothers. Information Research, 23(4), n4. https://files.eric.ed.gov/fulltext/EJ1200063.pdf
  • Lingel, J., & Boyd, D. (2013). “Keep it secret, keep it safe”: Information poverty, information norms, and stigma. Journal of the American Society for Information Science and Technology, 64(5), 981–991. https://doi.org/10.1002/asi.22800
  • Li, X., Zhang, X., Zhang, S., Lu, Z., Zhang, J., Zhou, J., Li, J., & Ou, L. (2021). Rare disease awareness and perspectives of physicians in China: A questionnaire-based study. Orphanet Journal of Rare Diseases, 16(1), 1–9. https://doi.org/10.1186/s13023-021-01788-3
  • Lund, B. D. (2019). The citation impact of information behavior theories in scholarly literature. Library & Information Science Research, 41(4), 100981. https://doi.org/10.1016/j.lisr.2019.100981
  • Marcella, R., & Chowdhury, G. (2020). Eradicating information poverty: An agenda for research. Journal of Librarianship and Information Science, 52(2), 366–381. https://doi.org/10.1177/0961000618804589
  • Mayer, D. K., Terrin, N. C., Kreps, G. L., Menon, U., McCance, K., Parsons, S. K., & Mooney, K. H. (2007). Cancer survivors information seeking behaviors: A comparison of survivors who do and do not seek information about cancer. Patient Education & Counseling, 65(3), 342–350.
  • McHugh, P., Lewis, S., Ford, S., Newlands, E., Rustin, G., Coombes, C., Smith, D., O’Reilly, S., & Fallowfield, L. (1995). The efficacy of audiotapes in promoting psychological well-being in cancer patients: A randomised, controlled trial. British Journal of Cancer, 71(2), 388–392. https://doi.org/10.1038/bjc.1995.79
  • Nagaraj, P. (n.d.). 6 Reasons why your baby might be admitted to the Neonatal Intensive Care Unit (NICU). UnityPoint Health. https://www.unitypoint.org/news-and-articles/6-reasons-why-your-baby-may-be-admitted-to-nicu—unitypoint-health
  • National Institute of Health. (2017). Faqs about rare diseases. https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases
  • National Institute of Health. (n.d.). Diagnosis. National Cancer Institute. Genetic and Rare Diseases Information Center. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/diagnosis
  • O’Connor, J. (1968). Opinion paper: Some questions concerning “information need.“ American Documentation, 19(2), 200–203. https://doi.org/10.1002/asi.5090190216
  • Ong, L. M., Visser, M. R., Lammes, F. B., & De Haes, J. C. (2000). Doctor–patient communication and cancer patients’ quality of life and satisfaction. Patient Education and Counseling, 41(2), 145–156. https://doi.org/10.1016/S0738-3991-99-00108-1
  • Palacios-Ceña, D., Famoso-Pérez, P., Salom-Moreno, J., Carrasco-Garrido, P., Pérez-Corrales, J., Paras-Bravo, P., & Güeita-Rodriguez, J. (2019). “Living an obstacle course”: A qualitative study Examining the experiences of caregivers of children with Rett Syndrome. International Journal of Environmental Research and Public Health, 16(1), 41. https://doi.org/10.3390/ijerph16010041
  • Palumbo, L. (2018). Instruction is contextual: An examination of McNair Program curricula for STEM scholars and recommendations based on the framework for information literacy in higher education. Science & Technology Libraries, 37(2), 187–210. https://doi.org/10.1080/0194262X.2018.1456089
  • Ramalle-Gómara, E., Domínguez-Garrido, E., Gómez-Eguílaz, M., Marzo-Sola, M. E., Ramón-Trapero, J. L., & Gil de Gómez, J. (2020). Education and information needs for physicians about rare diseases in Spain. Orphanet Journal of Rare Diseases, 15(1), 1–7. https://doi.org/10.1186/s13023-019-1285-0
  • Rauen, K. (2013). The RASopathies. Annual Review of Genomics and Human Genetics, 14(1), 355. https://doi.org/10.1146/annurev-genom-091212-153523
  • Rauen, K. A. (2022). Defining RASopathy. Disease Models & Mechanisms, 15(2), dmm049344. https://doi.org/10.1242/dmm.049344
  • Rollero, C. (2019). Quando il caregiving è maschile: uno studio qualitativo sui partner di donne affette da sclerosi multipla. Quando il caregiving è maschile: uno studio qualitativo sui partner di donne affette da sclerosi multipla, 85–96. https://www.medra.org/servlet/MREngine?hdl=10.3280/PDS2019-001005
  • Roter, D., & Hall, J. A. (2006). Doctors talking with patients/Patients talking with doctors: Improving communication in medical visits. Greenwood Publishing Group.
  • Sahin, B., & Tatar, M. (2006). Analysis of factors affecting patient satisfaction. Disease Management & Health Outcomes, 14(3), 171–183. https://doi.org/10.2165/00115677-200614030-00006
  • Schommer, J. C., Doucette, W. R., & Worley, M. M. (2001). Processing prescription drug information under different conditions of presentation. Patient Education and Counseling, 43(1), 49–59. https://doi.org/10.1016/S0738-3991-00-00145-2
  • Sharma, N., Chakrabarti, S., & Grover, S. (2016). Gender differences in caregiving among family-caregivers of people with mental illnesses. World Journal of Psychiatry, 6(1), 7. https://doi.org/10.5498/wjp.v6.i1.7
  • Toyo, O. D. (2017). Undergraduates’ information literacy skills and the use of electronic resources in Delta State University, Abraka, Nigeria. International Journal of Education and Evaluation, 3(1), 27–36. https://www.iiardjournals.org/get/IJEE/VOL.%203%20NO.%201%202017/UNDERGRADUATES%E2%80%99%20INFORMATION.pdf
  • Vernooij Dassen, M., Derksen, E., Scheltens, P., & Moniz-Cook, E. (2006). Receiving a diagnosis of dementia: The experience over time. Dementia, 5(3), 397–410. https://doi.org/10.1177/1471301206067114
  • Wang, T., & Dow, M. J. (2021). Rare disease, rare information: Using social media to satisfy unmet information needs. [Unpublished manuscript].
  • Wangler, M. F., Yamamoto, S., Chao, H. T., Posey, J. E., Westerfield, M., Postlethwait, J., Members of the Undiagnosed Diseases Network, Hieter, P., Boycott, K. M., Campeau, P. M., Bellen, H. J. (2017). Model organisms facilitate rare disease diagnosis and therapeutic research. Genetics, 207(1), 9–27. https://doi.org/10.1534/genetics.117.203067
  • Wang, T., & Lund, B. D. (2020). Categories of information need expressed by parents of individuals with rare disorders in a Facebook community group: A case study with implications for information professionals. Journal of Consumer Health on the Internet, 24(1), 24–32. https://doi.org/10.1080/15398285.2020.1713700
  • Yevelson-Shorsher, A., & Bronstein, J. (2018). Three perspectives on information literacy in academia: Talking to librarians, faculty, and students. College & Research Libraries, 79(4), 535. https://doi.org/10.5860/crl.79.4.535
  • Zollino, M., Zweier, C., Van Balkom, I. D., Sweetser, D. A., Alaimo, J., Bijlsma, E. K., Cody, J., Elsea, S. H., Giurgea, I., Macchiaiolo, M., Smigiel, R., Thibert, R. L., Benoist, I., Clayton-Smith, J., De Winter, C. F., Decker, S., Gandhi, A., Huisman, S., Kempink, D., … Hennekam, R. (2019). Diagnosis and management in Pitt‐Hopkins syndrome: First international consensus statement. Clinical Genetics, 95(4), 462–478. https://doi.org/10.1111/cge.13506

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