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18 - Disclosure in Adolescents and Emerging Adults with Chronic Illness

from Part IV - Applications

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Judith G. Smetana
Affiliation:
University of Rochester, New York
Nicole Campione-Barr
Affiliation:
University of Missouri, Columbia
Lauree C. Tilton-Weaver
Affiliation:
Örebro University
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Summary

We review work on disclosure to others about one’s chronic illness condition and challenges in the management of illnesses, focusing on the period of adolescence and emerging adulthood. Adolescents and young adults with a chronic illness who self-disclose to others (beyond parents) that they have a chronic illness are often quite strategic as to how much to disclose and to whom. We then review work on routine disclosures about challenges in the management of chronic illnesses that often occur between parents and adolescents and young adults and romantic partners that can elicit support. We focus our treatment on the illness context of type 1 diabetes, as there is little research on routine disclosure with other illness conditions. We conclude by linking this work to broader models of disclosures for health decisions, recommend that interventions that ease the burden of disclosure may be beneficial, and suggest directions for future research.

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References

Afifi, T., & Steuber, K. (2009). The Revelation Risk Model (RRM): Factors that predict the revelation of secrets and the strategies used to reveal them. Communication Monographs, 76(2), 144176. https://doi.org/10.1080/03637750902828412CrossRefGoogle Scholar
Afifi, W. A., & Afifi, T. D. (2020). The relative impacts of disclosure and secrecy: The role of (perceived) target response. Current Opinion in Psychology, 31, 9498. https://doi.org/10.1016/j.copsyc.2019.08.015CrossRefGoogle ScholarPubMed
Afify, S. M., & Pali-Scholl, I. (2017). Adverse reactions to food: The female dominance – A secondary publication and update. World Allergy Organization Journal, 10(43). https://doi.org/10.1186%2Fs40413-017-0174-zCrossRefGoogle ScholarPubMed
Ameri, M., & Kurtzberg, T. R. (2022). The disclosure dilemma: Requesting accommodations for chronic pain in job interviews. Journal of Cancer Survivorship, 16, 152164. https://doi.org/10.1007/s11764-021-01142-3CrossRefGoogle ScholarPubMed
Arnett, J. J. (2000). Emerging adulthood: A theory of development from the late teens through the twenties. American Psychologist, 55(5), 469480. https://doi.org/10.1037/0003-066X.55.5.469CrossRefGoogle ScholarPubMed
Beck, R. W., Tamborlane, W. V., Bergenstal, R. M., Miller, K. M., DuBose, S. N., & Hall, C. A. (2012). The T1D exchange clinic registry. Journal of Clinical Endocrinology and Metabolism, 97(12), 43834389. https://doi.org/10.1210/jc.2012-1561CrossRefGoogle ScholarPubMed
Benson, A., O’Toole, S., Lambert, V., Gallagher, P., Shahwan, A., & Austin, J. K. (2015). To tell or not to tell: A systematic review of the disclosure practices of children living with epilepsy and their parents. Epilepsy and Behavior, 51, 7395. https://doi.org/10.1016/j.yebeh.2015.07.013CrossRefGoogle ScholarPubMed
Berg, C. A., Butner, J. E., Wiebe, D. J., Lansing, A. H., Osborn, P., King, P. S., Palmer, D. L., & Butler, J. M. (2017). Developmental model of parent–child coordination for self-regulation across childhood and into emerging adulthood: Type 1 diabetes management as an example. Developmental Review, 46, 126. https://doi.org/10.1016/j.dr.2017.09.001CrossRefGoogle ScholarPubMed
Berg, C. A., Campbell, M. J. S., Kent de Grey, R. G., Butner, J. E., Murray, M., & Wiebe, D. J. (2022). Parental relationships, patient-centered communication with healthcare providers, and diabetes management across emerging adulthood. Journal of Pediatric Psychology, 47(6), 714722. https://doi.org/10.1093/jpepsy/jsac004CrossRefGoogle ScholarPubMed
Berg, C. A., Queen, T., Butner, J. E., Turner, S. L., Lansing, A. H., Main, A., Anderson, J. H., Thoma, B. C., Winnick, J. B., & Wiebe, D. J. (2017). Adolescent disclosure to parents and daily management of type 1 diabetes. Journal of Pediatric Psychology, 42(1), 7584. https://doi.org/10.1093/jpepsy/jsw056Google ScholarPubMed
Berg, C. A., Wiebe, D. J., Lee Tracy, E., Kelly, C. S., Mello, D., Turner, S. L., Butner, J. E., Munion, A. K., Mansfield, J. H., White, P. C., Murray, M., & Suchy, Y. (2019). Parental involvement and executive function in emerging adults with type 1 diabetes. Journal of Pediatric Psychology, 44(8), 970979. https://doi.org/10.1093/jpepsy/jsz025CrossRefGoogle ScholarPubMed
Brohan, E., Henderson, C., Wheat, K., Malcolm, E., Clement, S., Barley, E. A., Slade, M., & Thornicroft, G. (2012). Systematic review of beliefs, behaviours and influencing factors associated with disclosure of a mental health problem in the workplace. BMC Psychiatry, 12. https://doi.org/10.1186/1471-244X-12-11CrossRefGoogle ScholarPubMed
Bullard, K. M., Cowie, C. C., Lessem, S. E., Saydah, S. H., Menke, A., Geiss, L. S., Orchard, T. J., Rolka, D. B., & Imperatore, G. (2018). Prevalence of diagnosed diabetes in adults by diabetes type – United States, 2016. Morbidity and Mortality Weekly Report, 67, 359361. https://doi.org/10.15585/mmwr.mm6712a2CrossRefGoogle Scholar
Butner, J. E., Berg, C. A., Munion, A. K., Turner, S. L., Hughes-Lansing, A., Winnick, J. B., & Wiebe, D. J. (2018). Coordination of self- and parental-regulation surrounding type 1 diabetes management in late adolescence. Annals of Behavioral Medicine, 52(1), 2941. https://doi.org/10.1007/s12160-017-9922-0CrossRefGoogle ScholarPubMed
Campos, B., & Kim, H. S. (2017). Incorporating the cultural diversity of family and close relationships into the study of health. American Psychologist, 72(6), 543554. https://doi.org/10.1037/amp0000122CrossRefGoogle ScholarPubMed
Catona, D., Greene, K., & Magsamen-Conrad, K. (2015). Perceived benefits and drawbacks of disclosure practices: An analysis of PLWHAs Strategies for disclosing HIV status. Journal of Health Communication, 20(11), 12941301. https://doi.org/10.1080/10810730.2015.1018640CrossRefGoogle ScholarPubMed
Checton, M. G., & Greene, K. (2012). Beyond initial disclosure: The role of prognosis and symptom uncertainty in patterns of disclosure in relationships. Health Communication, 27(2), 145157. https://doi.org/10.1080/10410236.2011.571755CrossRefGoogle ScholarPubMed
Cystic-Fibrosis.com. (2019, August 16). How are men affected by cystic fibrosis? https://cystic-fibrosis.com/menGoogle Scholar
Dabelea, D., Mayer-Davis, E. J., Saydah, S., Imperatore, G., Linder, B., Divers, J., Bell, R., Badaru, A., Talton, J. W., Crume, T., Liese, A. D., Merchant, A. T., Lawrence, J. M., Reynolds, K., Dolan, L., Liu, L. L., Hamman, R. F., & SEARCH for Diabetes in Youth Study. (2014). Prevalence of type 1 and type 2 diabetes among children and adolescents from 2001 to 2009. JAMA, 311(17), 17781786. https://doi.org/10.1001/jama.2014.3201CrossRefGoogle ScholarPubMed
Derlega, V. J., Winstead, B. A., Greene, K., Serovich, J., & Elwood, W. N. (2002). Perceived HIV-related stigma and HIV disclosure to relationship partners after finding out about the seropositive diagnosis. Journal of Health Psychology, 7, 415432. https://doi.org/10.1177/1359105302007004330CrossRefGoogle ScholarPubMed
Disla, J., Main, A., Yung, S. T., Loyola, M. D. R., Wiebe, D. J., Cameron, L. D., Cakan, N., & Raymond, J. K. (2022). Parent affective responses to observed adolescent disclosures in the context of type 1 diabetes management. Journal of Family Psychology, 37(2), 215222. https://doi.org/10.1037/fam0001054CrossRefGoogle ScholarPubMed
Fuseini, H., & Newcomb, D. C. (2017). Mechanisms driving gender differences in asthma. Current Allergy Asthma Report, 17(3), Article 19. https://doi.org/10.1007/s11882-017-0686-1CrossRefGoogle ScholarPubMed
Gray, A. L., Campbell, M. J. S., Berg, C. A., & Wiebe, D. J. (2021). Qualitative analysis of helpful and unhelpful aspects of social relationships among young adults with type 1 diabetes. Diabetic Medicine, 38(5), Article e14441. https://doi.org/10.1111/dme.14441CrossRefGoogle ScholarPubMed
Greco, P., Pendley, J. S., McDonell, K., & Reeves, G. (2001). A peer group intervention for adolescents with type 1 diabetes and their best friends. Journal of Pediatric Psychology, 26, 485490. https://doi.org/10.1093/jpepsy/26.8.485CrossRefGoogle Scholar
Greene, K., Magsamen-Conrad, K., Venetis, M. K., Checton, M. G., Bagdasarov, Z., & Banerjee, S. C. (2012). Assessing health diagnosis disclosure decisions in relationships: Testing the disclosure decision-making model. Health Communication, 27(4), 356368. https://doi.org/10.1080/10410236.2011.586988CrossRefGoogle ScholarPubMed
Guo, Y., Killoren, S., & Campione-Barr, N. (2022). Strategies and reasons for nondisclosure in close relationships during adolescence. Journal of Youth & Adolescence, 51(9), 18411857. https://doi.org/10.1007/s10964-022-01634-0CrossRefGoogle ScholarPubMed
Habenicht, A. E., Gallagher, S., O’Keeffe, M.-C., & Creaven, A.-M. (2018). Making the leap and finding your feet: A qualitative study of disclosure and social support in university students with type 1 diabetes. Journal of Health Psychology, 26(2), 260269. https://doi.org/10.1177/1359105318810875CrossRefGoogle Scholar
Hakkarainen, P., Moilanen, L., Hänninen, V., Räsänen, K., & Munir, F. (2017). Short report: Educational and psychological aspects of disclosure of type 1 diabetes at work among Finnish workers. Diabetic Medicine, 34(1), 115119. https://doi.org/10.1111/dme.13134CrossRefGoogle Scholar
Hakkarainen, P., Munir, F., Moilanen, L., Räsänen, K., & Hänninen, V. (2018). Concealment of type 1 diabetes at work in Finland: A mixed-method study. BMJ Open, 8(1). https://doi.org/10.1136/bmjopen-2017-019764CrossRefGoogle ScholarPubMed
Hamza, C. A., & Willoughby, T. (2011). Perceived parental monitoring, adolescent disclosure, and adolescent depressive symptoms: A longitudinal examination. Journal of Youth and Adolescence, 40(7), 902915. https://doi.org/10.1007/s10964-010-9604-8CrossRefGoogle ScholarPubMed
Helgeson, V. S., Palladino, D. K., Reynolds, K. A., Becker, D. J., Escobar, O., & Siminerio, L. (2014). Relationships and health among emerging adults with and without type 1 diabetes. Health Psychology, 33(10), 11251133. https://doi.org/10.1037/a0033511CrossRefGoogle ScholarPubMed
Helgeson, V. S., Vaughn, A. K., Seltman, H., Orchard, T., Becker, D., & Libman, I. (2018). Relation of parent knowledge to glycemic control among emerging adults with type 1 diabetes: A mediational model. Journal of Behavioral Medicine, 41(2), 186194. https://doi.org/10.1007/s10865-017-9886-3CrossRefGoogle ScholarPubMed
Hood, K. K., Peterson, C. M., Rohan, J. M., & Drotar, D. (2009). Association between adherence and glycemic control in pediatric type 1 diabetes: A meta-analysis. Pediatrics, 124(6), e1171–e1179. https://doi.org/10.1542/peds.2009-0207CrossRefGoogle ScholarPubMed
Hu, Y., Shan, Y, Du, Q., Ding, Y, Shen, C., Wang, S., Ding, M., & Xu, Y. (2021). Gender and socioeconomic disparities in global burden of epilepsy: An analysis of time trends from 1990 to 2017. Frontiers in Neurology, 12, Article 643450. https://doi.org/10.3389%2Ffneur.2021.643450CrossRefGoogle ScholarPubMed
Igler, E. C., Austin, J. E., Sejkora, E. K. D., & Davies, W. H. (2024). Friends’ perspective: Young adults’ reaction to disclosure of chronic illness. Journal of Clinical Psychology in Medical Settings, 31(1), 197207. https://doi.org/10.1007/s10880-023-09956-2CrossRefGoogle ScholarPubMed
Joachim, G., & Acorn, S. (2000). Stigma of visible and invisible chronic conditions. Journal of Advanced Nursing, 32(1), 243248. https://doi.org/10.1046/j.1365-2648.2000.01466.xCrossRefGoogle ScholarPubMed
Kaufman, F. R. (2012). Medical management of type 1 diabetes (6th ed.). American Diabetes Association.Google Scholar
Kaushansky, D., Cox, J., Dodson, C., Mcneeley, M., Kumar, S., & Iverson, E. (2017). Living a secret: Disclosure among adolescents and young adults with chronic illnesses. Chronic Illness, 13(1), 4961. https://doi.org/10.1177/1742395316655855CrossRefGoogle ScholarPubMed
Kelly, C. S., Berg, C. A., Lansing, A. H., Turner, S. L., Munion, A. K., Tracy, E. L., & Wiebe, D. J. (2019). Keeping parents connected in early emerging adulthood: Diabetes-related disclosure and solicitation. Journal of Family Psychology, 33(7), 809818. https://doi.org/10.1037/fam0000565CrossRefGoogle ScholarPubMed
King, P. S., Berg, C. A., Butner, J., Butler, J. M., & Wiebe, D. J. (2014). Longitudinal trajectories of parental involvement in type 1 diabetes and adolescents’ adherence. Health Psychology, 33(5), 424432. https://doi.org/10.1037/a0032804CrossRefGoogle ScholarPubMed
Lawrence, J. M., Divers, J., & Isom, S. (2021). Trends in prevalence of type 1 and type 2 diabetes in children and adolescents in the US, 2001–2017. JAMA, 326(8), 717727. https://doi.org/10.1001/jama.2021.11165CrossRefGoogle ScholarPubMed
Ledford, C. J. W., Villareal, C., Williams, E. W., Cafferty, L. A., Jackson, J. T., & Seehusen, D. A. (2022). Patient decision-making about self-disclosure of a type 2 diabetes diagnosis: A qualitative study. Diabetes Spectrum, 35(3), 327334. https://doi.org/10.2337/ds21-0043CrossRefGoogle ScholarPubMed
Lindell, A. K., Campione-Barr, N., & Killoren, S. E. (2015). Technology-mediated communication with siblings during the transition to college: Associations with relationship positivity and self-disclosure. Family Relations, 64(4), 563578. https://doi.org/10.1111/fare.12133CrossRefGoogle Scholar
Litchman, M.L., Campbell, M., Porter, M., Tracy, E., Allen, N.A., Berg, C. (2022). Diabetes education needs when multiple family members have type 1 diabetes [Paper presentation]. Association of Diabetes Care and Education Specialists Annual Conference, August, Baltimore MD.Google Scholar
Main, A., Lougheed, J. P., Disla, J., & Kashi, S. (2019). Timing of adolescent emotional disclosures: The role of maternal emotions and adolescent age. Emotion, 19(5), 829840. https://doi.org/10.1037/emo0000483CrossRefGoogle ScholarPubMed
Miller, K. M., Foster, N. C., Beck, R. W., Bergensta, R. M., DuBose, S. N., DiMeglio, L. A., Maahs, D. M., & Tamborlane, W. V. (2015). Current state of type 1 diabetes treatment in the U.S.: Updated data from the t1d exchange clinic registry. Diabetes Care, 38(6), 971978. https://doi.org/10.2337/dc15-0078CrossRefGoogle ScholarPubMed
Munion, A. K., Butner, J. E., Kelly, C. S., Wiebe, D. J., Turner, S. L., Lansing, A. H., & Berg, C. A. (2020). The separation in coordination between social- and self-regulation for emerging adults with type 1 diabetes. Journal of Behavioral Medicine, 43(6), 892903. https://doi.org/10.1007/s10865-020-00134-5CrossRefGoogle ScholarPubMed
Oris, L., Seiffge-Krenke, I., Moons, P., Goubert, L., Rassart, J., Goossens, E., & Luyckx, K. (2016). Parental and peer support in adolescents with a chronic condition: A typological approach and developmental implications. Journal of Behavioral Medicine, 39(1), 107119. https://doi.org/10.1007/s10865-015-9680-zCrossRefGoogle ScholarPubMed
Osborn, P., Berg, C. A., Hughes, A. E., Pham, P., & Wiebe, D. J. (2013). What mom and dad don’t know CAN hurt you: Adolescent disclosure to and secrecy from parents about type 1 diabetes. Journal of Pediatric Psychology, 38(2), 141150. https://doi.org/10.1093/jpepsy/jss102CrossRefGoogle ScholarPubMed
Pambianco, G., Costacou, T., Ellis, D., Becker, D. J., Klein, R., & Orchard, T. J. (2006). The 30-year natural history of type 1 diabetes complications: The Pittsburgh epidemiology of diabetes complications study experience. Diabetes, 55(5), 14631469. https://doi.org/10.2337/db05-1423CrossRefGoogle ScholarPubMed
Pathmalingam, T., Moola, F. J., & Woodgate, R. L. (2022). Illness conversations: Self-disclosure among children and youth with chronic illnesses. Chronic Illness, 19(3), 475494. https://doi.org/10.1177/17423953221110152CrossRefGoogle ScholarPubMed
Pinquart, M. (2013). Do the parent–child relationship and parenting behaviors differ between families with a child with and without chronic illness? A meta-analysis. Journal of Pediatric Psychology, 38(7), 708721. https://doi.org/10.1093/jpepsy/jst020CrossRefGoogle ScholarPubMed
Pinquart, M. (2014). Achievement of developmental milestones in emerging and young adults with and without pediatric chronic illness: A meta-analysis. Journal of Pediatric Psychology, 39(6), 577587. https://doi.org/10.1093/jpepsy/jsu017CrossRefGoogle Scholar
Pinquart, M., (2020). Health-related quality of life of young people with and without chronic conditions. Journal of Pediatric Psychology, 45, 780792. https://doi.org/10.1093/jpepsy/jsaa052CrossRefGoogle ScholarPubMed
Pinquart, M., & Shen, Y. (2011). Depressive symptoms in children and adolescents with chronic physical illness: An updated meta-analysis. Journal of Pediatric Psychology, 36(4), 375384. https://doi.org/10.1093/jpepsy/jsq104CrossRefGoogle ScholarPubMed
Rasmussen, E. E., Shannon, K. L., & Pitchford, B. (2022). Adolescents’ disclosure of mental illness to parents: Preferences and barriers. Health Communication, 37(3), 346355. https://doi.org/10.1080/10410236.2020.1839201CrossRefGoogle ScholarPubMed
Silva, N., Pereira, M., Otto, C., Ravens-Sieberer, U., Canavarro, M. C., & Bullinger, M. (2019). Do 8- to 18-year-old children/adolescents with chronic physical health conditions have worse health-related quality of life than their healthy peers? A meta-analysis of studies using the KIDSCREEN questionnaires. Quality of Life Research, 28, 17251750. https://doi.org/10.1007/s11136-019-02189-7CrossRefGoogle Scholar
Smetana, J. G. (2006). Social domain theory: Consistencies and variations in children’s moral and social judgments. In Killen, M. & Smetana, J. G. (Eds.), Handbook of moral development (pp. 119153). Lawrence Erlbaum Associates.Google Scholar
Soenens, B., Vansteenkiste, M., Luyckx, K., & Goossens, L. (2006). Parenting and adolescent problem behavior: An integrated model with adolescent self-disclosure and perceived parental knowledge as intervening variables. Developmental Psychology, 42(2), 305318. https://doi.org/10.1037/0012-1649.42.2.305CrossRefGoogle ScholarPubMed
Tilton-Weaver, L. (2014). Adolescents’ information management: Comparing ideas about why adolescents disclose to or keep secrets from their parents. Journal of Youth and Adolescence, 43(5), 803813. https://doi.org/10.1007/s10964-013-0008-4CrossRefGoogle ScholarPubMed
Tilton-Weaver, L. C., Marshall, S. K., & Darling, N. (2014). What’s in a name? Distinguishing between routine disclosure and self-disclosure. Journal of Research on Adolescence, 24(4), 551563. https://doi.org/10.1111/jora.12090CrossRefGoogle Scholar
Tucker, C., Wiebe, D. J., Main, A., Lee, A. G., & White, P. C. (2018). Adolescent information management and parental knowledge in non-Latino white and Latino youth managing type 1 diabetes. Journal of Pediatric Psychology, 43(2), 207217. https://doi.org/10.1093/jpepsy/jsx111CrossRefGoogle ScholarPubMed
Weissberg-Benchell, J., & Shapiro, J. B. (2017). A review of interventions aimed at facilitating successful transition planning and transfer to adult care among youth with chronic illness. Pediatric Annals, 46(5), e182–e187. https://doi.org/10.3928/19382359-20170421-01CrossRefGoogle ScholarPubMed
Weissberg-Benchell, J., Wolpert, H., & Anderson, B. J. (2007). Transitioning from pediatric to adult care: A new approach to the post-adolescent young person with type 1 diabetes. Diabetes Care, 30(10), 24412446. https://doi.org/10.2337/dc07-1249CrossRefGoogle Scholar
Wentzell, K., Vessey, J. A., & Laffel, L. M. B. (2020 ). How do the challenges of emerging adulthood inform our understanding of diabetes distress? An integrative review. Current Diabetes Reports, 20(6), 114. https://doi.org/10.1007/s11892-020-01301-3CrossRefGoogle ScholarPubMed
Wiebe, D. J., Chow, C. M., Palmer, D. L., Butner, J., Butler, J. M., Osborn, P., & Berg, C. A. (2014). Developmental processes associated with longitudinal declines in parental responsibility and adherence to type 1 diabetes management across adolescence. Journal of Pediatric Psychology, 39(5), 532541. https://doi.org/10.1093/jpepsy/jsu006CrossRefGoogle ScholarPubMed
Woodgate, R. L., Tennent, P., Barriage, S., & Legras, N. (2022). The centrality of disclosure decisions to the illness experience for youth with chronic conditions: A qualitative study. Journal of Health Psychology, 27(3), 521533. https://doi.org/10.1177/1359105320962242CrossRefGoogle Scholar
Wysocki, T., Harris, M. A., Buckloh, L. M., Mertlich, D., Lochrie, A. S., Taylor, A., Sadler, M., Mauras, N., & White, N. H. (2006). Effects of behavioral family systems therapy for diabetes on adolescents’ family relationships, treatment adherence, and metabolic control. Journal of Pediatric Psychology, 31(9), 928938. https://doi.org/10.1093/jpepsy/jsj098CrossRefGoogle ScholarPubMed

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