Content Analysis of Social Support, and Disease Framing of Klinefelter Syndrome and Down Syndrome: Social Support, Framing and Decision Tendencies

References

• Alarcon, G. M., Bowling, N. A., & Khazon, S. (2013). Great expectations: A meta-analytic examination of optimism and hope. Personality and Individual Differences, 54(7), 821–827. https://doi.org/10.1016/j.paid.2012.12.004
   Web of Science ®Google Scholar
• Anker, A. E., Reinhart, A. M., & Feeley, T. H. (2011). Health information seeking: A review of measures and methods. Patient Education and Counseling, 82(3), 346–354. https://doi.org/10.1016/j.pec.2010.12.008
   PubMed Web of Science ®Google Scholar
• Asplin, N., Wessel, H., Marions, L., & Öhman, S. G. (2012). Pregnant women’s experiences, needs, and preferences regarding information about malformations detected by ultrasound scan. Sexual & Reproductive Healthcare, 3(2), 73–78. https://doi.org/10.1016/j.srhc.2011.12.002
   PubMed Web of Science ®Google Scholar
• Barak, A., Boniel-Nissim, M., & Suler, J. (2008). Fostering empowerment in online support groups. Computers in Human Behavior, 24(5), 1867–1883. https://doi.org/10.1016/j.chb.2008.02.004
   Web of Science ®Google Scholar
• Baum, L. S. (2004). Internet parent support groups for primary caregivers of a child with special health care needs. Pediatric Nursing, 30(5), 381–401. https://pubmed.ncbi.nlm.nih.gov/15587531/
   PubMedGoogle Scholar
• Beck, S. J., Paskewitz, E. A., Anderson, W. A., Bourdeaux, R., & Currie-Mueller, J. (2017). The task and relational dimensions of online social support. Health Communication, 32(3), 347–355. https://doi.org/10.1080/10410236.2016.1138383
   PubMed Web of Science ®Google Scholar
• Bell, M., & Stoneman, Z. (2000). Reactions to prenatal testing: Reflection of religiosity and attitudes toward abortion and people with disabilities. American Journal on Mental Retardation, 105(1), 1–13. https://doi.org/10.1352/0895-8017(2000)105<0001:RTPTRO>2.0.CO;2
   PubMedGoogle Scholar
• Biesecker, B. (2001). Prenatal diagnoses of sex chromosome conditions: Parents need more than just accurate information. Western Journal of Medicine, 174(6), 322. https://doi.org/10.1136/ewjm.174.6.377
   Google Scholar
• Canary, H. E. (2008). Creating supportive connections: A decade of research on support for families of children with disabilities. Health Communication, 23(5), 413–426. https://doi.org/10.1080/10410230802342085
   PubMed Web of Science ®Google Scholar
• Centers for Disease Control and Prevention. (2020, October, 23). Data and statistics on Down Syndrome. https://www.cdc.gov/ncbddd/birthdefects/downsyndrome/data.html
   Google Scholar
• Cless, J. D., Nelson Goff, B. S., & Durtschi, J. A. (2018). Hope, coping, and relationship quality in mothers of children with Down Syndrome. Journal of Marital and Family Therapy, 44(2), 307–322. https://doi.org/10.1111/jmft.12249
   PubMed Web of Science ®Google Scholar
• Cohen, S. (2004). Social relationships and health. American Psychologist, 59(8), 676. https://doi.org/10.1037/0003-066X.59.8.676
   PubMed Web of Science ®Google Scholar
• Cohen, S., Mermelstein, R., Kamarck, T., & Hoberman, H. (1985). Measuring the functional components of social support. In I. G. Sarason & B. R. Sarason (Eds.), Social support: Theory, research and applications. NATO ASI series (Vol. 24, pp. 73–94). Springer. https://doi.org/10.1007/978-94-009-5115-0_5
   Google Scholar
• Cohen, S., Underwood, L. G., & Gottlieb, B. H. (2000). Social support measurement and intervention: A guide for health and social scientists. Oxford University Press. https://doi.org/10.1093/med:psych/9780195126709.001.0001
   Google Scholar
• Croyle, R. T., & Hunt, J. R. (1991). Coping with health threat: Social influence processes in reactions to medical test results. Journal of Personality and Social Psychology, 60(3), 382. https://doi.org/10.1037/0022-3514.60.3.382
   PubMed Web of Science ®Google Scholar
• Cutrona, C. E., & Russell, D. W. (1990). Type of social support and specific stress: Toward a theory of optimal matching. In B. R. Sarason, I. G. Sarason, & G. R. Pierce (Eds.), Wiley series on personality processes. Social support: An interactional view (pp. 319–366). John Wiley & Sons.
   Google Scholar
• Cutrona, C. E., & Suhr, J. A. (1992). Controllability of stressful events and satisfaction with spouse support behaviors. Communication Research, 19(2), 154–174. https://doi.org/10.1177/009365092019002002
   Web of Science ®Google Scholar
• Doty, J. L., & Dworkin, J. (2014). Online social support for parents: A critical review. Marriage & Family Review, 50(2), 174–198. https://doi.org/10.1080/01494929.2013.834027
   Google Scholar
• Duggleby, W., Holtslander, L., Kylma, J., Duncan, V., Hammond, C., & Williams, A. (2010). Metasynthesis of the hope experience of family caregivers of persons with chronic illness. Qualitative Health Research, 20(2), 148–158. https://doi.org/10.1177/1049732309358329
   PubMed Web of Science ®Google Scholar
• Entman, R. M. (1993). Framing: Toward clarification of a fractured paradigm. Journal of Communication, 43(4), 51–58. https://doi.org/10.1111/j.1460-2466.1993.tb01304.x
   Web of Science ®Google Scholar
• Fiedland, L. A., & Mengbai, Z. (1996). International television coverage of Beijing Spring 1989: A comparative approach. Journalism & Communication Monographs, 156, 1–60. https://www-proquest-com.stanford.idm.oclc.org/scholarly-journals/international-television-coverage-beijing-spring/docview/215676266/se-2?accountid=14026
   Google Scholar
• Folkman, S., & Lazarus, R. S. (1984). Stress, appraisal, and coping. Springer Publishing Company. https://doi.org/10.1007/978-1-4419-1005-9_215
   Google Scholar
• Gong, J., Zhang, Y., Yang, Z., Huang, Y., Feng, J., & Zhang, W. (2013). The framing effect in medical decision-making: A review of the literature. Psychology, Health & Medicine, 18(6), 645–653. https://doi.org/10.1080/13548506.2013.766352
   PubMed Web of Science ®Google Scholar
• Gray, J. (2013). Feeding on the web: Online social support in the breastfeeding context. Communication Research Reports, 30(1), 1–11. https://doi.org/10.1080/08824096.2012.746219
   Google Scholar
• Gundersen, T. (2011). ‘One wants to know what a chromosome is’: The internet as a coping resource when adjusting to life parenting a child with a rare genetic disorder. Sociology of Health & Illness, 33(1), 81–95. https://doi.org/10.1111/j.1467-9566.2010.01277.x
   PubMed Web of Science ®Google Scholar
• Hagger, M. S., & Orbell, S. (2003). A meta-analytic review of the common-sense model of illness representations. Psychology & Health, 18(2), 141–184. https://doi.org/10.1080/088704403100081321
   Web of Science ®Google Scholar
• Harkins, S. G., & Petty, R. E. (1987). Information utility and the multiple source effect. Journal of Personality and Social Psychology, 52(2), 260. https://doi.org/10.1037/0022-3514.52.2.260
   Web of Science ®Google Scholar
• Hether, H. J., Murphy, S. T., & Valente, T. W. (2016). A social network analysis of supportive interactions on prenatal sites. Digital Health, 2, 205520761662870. https://doi.org/10.1177/2055207616628700
   Web of Science ®Google Scholar
• High, A. C., & Steuber, K. R. (2014). An examination of support (in) adequacy: Types, sources, and consequences of social support among infertile women. Communication Monographs, 81(2), 157–178. https://doi.org/10.1080/03637751.2013.878868
   Web of Science ®Google Scholar
• Holton, A. E., Canary, H. E., & Wong, B. (2017). Business and breakthrough: Framing (Expanded) genetic carrier screening for the public. Health Communication, 32(9), 1051–1058. https://doi.org/10.1080/10410236.2016.1196515
   PubMed Web of Science ®Google Scholar
• Huyard, C. (2012). Decision-making after prenatal diagnosis of a syndrome predisposing to intellectual disability: What prospective parents need to know and the importance of non-medical information. Journal of Intellectual & Developmental Disability, 37(4), 315–323. https://doi.org/10.3109/13668250.2012.726350
   PubMed Web of Science ®Google Scholar
• Introne, J., & Goggins, S. (2019). Advice reification, learning, and emergent collective intelligence in online health support communities. Computers in Human Behavior, 99, 205–218. https://doi.org/10.1016/j.chb.2019.05.028
   Web of Science ®Google Scholar
• Jeon, K. C., Chen, L.-S., & Goodson, P. (2011). Decision to abort after a prenatal diagnosis of sex chromosome abnormality: A systematic review of the literature. Genetics in Medicine, 14(1), 27–38. https://doi.org/10.1038/gim.0b013e31822e57a7
   PubMed Web of Science ®Google Scholar
• Johns Hopkins Medicine. (2013, September 20). New hope for those with Klinefelter Syndrome. https://www.hopkinsmedicine.org/news/publications/physician_update/physician_update_fall_2013/new_hope_for_those_with_klinefelter_syndrome
   Google Scholar
• Leventhal, H., Meyer, D., & Nerenz, D. (1980). The common sense representation of illness danger. In S. Rachman (Eds.), Contributions to Medical Psychology, (Vol 2) (pp. 7–30). New York, NY: Pargamon. https://doi.org/10.1007/BF02090456
   Google Scholar
• Madge, C., & O’connor, H. (2006). Parenting gone wired: Empowerment of new mothers on the internet? Social & Cultural Geography, 7(2), 199–220. https://doi.org/10.1080/14649360600600528
   Web of Science ®Google Scholar
• Morahan-Martin, J. M. (2004). How internet users find, evaluate, and use online health information: A cross-cultural review. CyberPsychology & Behavior, 7(5), 497–510. https://doi.org/10.1089/cpb.2004.7.497
   PubMedGoogle Scholar
• Natoli, J. L., Ackerman, D. L., McDermott, S., & Edwards, J. G. (2012). Prenatal diagnosis of Down Syndrome: A systematic review of termination rates (1995–2011). Prenatal Diagnosis, 32(2), 142–153. https://doi.org/10.1002/pd.2910
   PubMed Web of Science ®Google Scholar
• Pirolli, P. (2007). Information foraging theory: Adaptive interaction with information. Oxford University Press. https://doi.org/10.1093/acprof:oso/9780195173321.001.0001
   Google Scholar
• Prescott, J., & Mackie, L. (2017). “You sort of go down a rabbit hole … You’re just going to keep on searching”: A qualitative study of searching online for pregnancy-related information during pregnancy. Journal of Medical Internet Research, 19(6), 194. https://doi.org/10.2196/jmir.6302
   PubMed Web of Science ®Google Scholar
• Rains, S. A. (2018). Coping with illness digitally. MIT Press.
   Google Scholar
• Rains, S. A., Peterson, E. B., & Wright, K. B. (2015). Communicating social support in computer-mediated contexts: A meta-analytic review of content analyses examining support messages shared online among individuals coping with illness. Communication Monographs, 82(4), 403–430. https://doi.org/10.1080/03637751.2015.1019530
   Web of Science ®Google Scholar
• Rains, S. A., & Wright, K. B. (2016). Social support and computer-mediated communication: A state-of-the-art review and agenda for future research. Annals of the International Communication Association, 40(1), 175–211. https://doi.org/10.1080/23808985.2015.11735260
   Google Scholar
• Reese, S. D. (2007). The framing project: A bridging model for media research revisited. Journal of Communication, 57(1), 148–154. https://doi.org/10.1111/j.1460-2466.2006.00334.x
   Web of Science ®Google Scholar
• Robinson, C., & Pond, R. (2019). Do online support groups for grief benefit the bereaved? Systematic review of the quantitative and qualitative literature. Computers in Human Behavior, 100, 48–59. https://doi.org/10.1016/j.chb.2019.06.011
   Web of Science ®Google Scholar
• Rothman, A. J., & Kiviniemi, M. T. (1999). Treating people with information: An analysis and review of approaches to communicating health risk information. JNCI Monographs, 1999(25), 44–51. https://doi.org/10.1093/oxfordjournals.jncimonographs.a024207
   Google Scholar
• Rubel, M. A., Werner-Lin, A., Barg, F. K., & Bernhardt, B. A. (2017). Expert knowledge influences decision-making for couples receiving positive prenatal chromosomal microarray testing results. Culture, Medicine and Psychiatry, 41(3), 382–406. https://doi.org/10.1007/s11013-017-9521-3
   PubMed Web of Science ®Google Scholar
• Sarason, I. G., & Sarason, B. R. (2009). Social support: Mapping the construct. Journal of Social and Personal Relationships, 26(1), 113–120. https://doi.org/10.1177/0265407509105526
   Web of Science ®Google Scholar
• Saxton, M. (1988). Parenting screening and discriminatory attitudes about disability. Women & Health, 13(1–2), 217–224. https://doi.org/10.1300/J013v13n01_20
   Web of Science ®Google Scholar
• Schechtman, K. B., Gray, D. L., Baty, J. D., & Rothman, S. M. (2002). Decision-making for termination of pregnancies with fetal anomalies: Analysis of 53,000 pregnancies. Obstetrics&Gynecology, 99(2), 216–222. https://doi.org/10.1016/s0029-7844(01)01673-8
   Google Scholar
• Scheid, T. L., & Wright, E. R. (2017). A handbook for the study of mental health: Social contexts, theories, and systems. Cambridge University Press. https://doi.org/10.1017/9781316471289
   Google Scholar
• Scheufele, D. A., & Tewksbury, D. (2006). Framing, agenda setting, and priming: The evolution of three media effects models. Journal of Communication, 57(1), 9–20. https://doi.org/10.1111/j.0021-9916.2007.00326.x
   Web of Science ®Google Scholar
• Shea, T. L. (2017). Prenatal paradox: An integrative review of women’s experiences with prenatal screening for fetal aneuploidy and neural tube defects. Contemporary Nurse, 53(2), 235–261. https://doi.org/10.1080/10376178.2016.1269609
   PubMed Web of Science ®Google Scholar
• Snyder, C. R. (2002). Hope theory: Rainbows in the mind. Psychological Inquiry, 13(4), 249–275. https://doi.org/10.1207/S15327965PLI1304_01
   Web of Science ®Google Scholar
• Snyder, C. R., Harris, C., Anderson, J. R., Holleran, S. A., Irving, L. M., Sigmon, S. T., Yoshinobu, L., Gibb, J., Langelle, C., & Harney, P. (1991). The will and the ways: Development and validation of an individual-differences measure of hope. Journal of Personality and Social Psychology, 60(4), 570. https://doi.org/10.1037/0022-3514.60.4.570
   PubMed Web of Science ®Google Scholar
• So, P. L., Cheng, K. Y. Y., Cheuk, K. Y., Chiu, W. K., Mak, S. L., Mok, S. L., Lo, T. K., Yung, W. K., Lo, F. M., & Chung, H. Y. B. (2017). Parental decisions following prenatal diagnosis of sex chromosome aneuploidy in Hong Kong. Journal of Obstetrics and Gynaecology Research, 43(12), 1821–1829. https://doi.org/10.1111/jog.13451
   PubMed Web of Science ®Google Scholar
• Thoits, P. A. (1995). Stress, coping, and social support processes: Where are we? What next? Journal of Health and Social Behavior, 35, 53–79. https://doi.org/10.2307/2626957
   Web of Science ®Google Scholar
• Thompson, S. C. (1981). Will it hurt less if I can control it? A complex answer to a simple question. Psychological Bulletin, 90(1), 89–101. https://doi.org/10.1037/0033-2909.90.1.89
   PubMed Web of Science ®Google Scholar
• Trobst, K. K. (2000). An interpersonal conceptualization and quantification of social support transactions. Personality & Social Psychology Bulletin, 26(8), 971–986. https://doi.org/10.1177/01461672002610007
   Web of Science ®Google Scholar
• Uchino, B. N. (2009). Understanding the links between social support and physical health: A life-span perspective with emphasis on the separability of perceived and received support. Perspectives on Psychological Science, 4(3), 236–255. https://doi.org/10.1111/j.1745-6924.2009.01122.x
   Web of Science ®Google Scholar
• Uchino, B. N., Bowen, K., Carlisle, M., & Birmingham, W. (2012). Psychological pathways linking social support to health outcomes: A visit with the “ghosts” of research past, present, and future. Social Science & Medicine, 74(7), 949–957. https://doi.org/10.1016/j.socscimed.2011.11.023
   PubMed Web of Science ®Google Scholar
• Uchino, B. N., Cacioppo, J. T., & Kiecolt-Glaser, J. K. (1996). The relationship between social support and physiological processes: A review with emphasis on underlying mechanisms and implications for health. Psychological Bulletin, 119(3), 488–531. https://doi.org/10.1037/0033-2909.119.3.488
   PubMed Web of Science ®Google Scholar
• Vaux, A. (1988). Social support: Theory, research, and intervention. Praeger Publishers.
   Google Scholar
• Visootsak, J., & Graham, J. M. (2006). Klinefelter syndrome and other sex chromosomal aneuploidies. Orphanet Journal of Rare Diseases, 1(1), 42. https://doi.org/10.1186/1750-1172-1-42
   PubMedGoogle Scholar
• Wool, C. (2011). Systematic review of the literature: Parental outcomes after diagnosis of fetal anomaly. Advances in Neonatal Care, 11(3), 182–192. https://doi.org/10.1097/ANC.0b013e31821bd92d
   PubMedGoogle Scholar