Abstract
There has been increasing attention focused on cultural, ethical, and legal issues in adherence clinical and research efforts since the last edition of this book was published over 10 years ago. In this chapter, we will review (1) issues related to culture, such as cultural sensitivity and competence among healthcare providers; (2) ethical issues, such as the often competing principles of beneficence and autonomy as it relates to providers convincing their patients and caregivers to adopt effective medical treatments; and (3) legal issues, such as when is nonadherence considered medical neglect, particularly for infants and young children who rely on their caregivers to administer effective and life-saving medical treatments. We are going to raise many issues that we do not have definitive answers and leave it up to the readers to decide where they weigh in on the issues.
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References
American Academy of Pediatrics, Committee on Bioethics. (1997). Religious objections to medical care. Pediatrics, 99, 279–281.
American Academy of Pediatrics, Committee on Bioethics. (2001). Institutional ethics committees. Pediatrics, 107, 205–209. https://doi.org/10.1542/peds.107.1.205
American Psychological Association. (2010, June 1). Ethical principles of psychologists and code of conduct. Retrieved from https://www.apa.org/ethics/code/principles
Azzopardi, C., Wade, M., Salter, R., Macdougall, G., Shouldice, M., Read, S., & Bitnun, A. (2014). Medical nonadherence in pediatric HIV: Psychosocial risks and intersection with child protection system for medical neglect. Child Abuse & Neglect, 38, 1766–1777. https://doi.org/10.1016/j.chiabu.2014.08.013
Bhatia, S., Landier, W., Shangguan, M., Hageman, L., Schaible, A. N., Carter, A. R., Hanby, C. L., Leisenring, W., Yasui, Y., Kornegay, N. M., Mascarenhas, L., Ritchey, A. K., Casillas, J. N., Dickens, D. S., Meza, J., Carroll, W. L., Relling, M. V., & Wong, F. L. (2012). Nonadherence to oral mercaptopurine and risk of relapse in Hispanic and non-Hispanic white children with acute lymphoblastic leukemia: A report from the Children’s Oncology Group. Journal of Clinical Oncology, 30, 2094–2101. https://doi.org/10.1200/jco.2011.38.9924
Cheng, T. L., & Goodman, E. (2015). Race, ethnicity, and socioeconomic status in research on child health. Pediatrics, 135, e225–e237. https://doi.org/10.1542/peds.2014-3109
Clay, D. L. (2017). Culture and diversity in research and practice. In M. C. Roberts & R. G. Steele (Eds.), Handbook of pediatric psychology (5th ed., pp. 81–91). Guilford Press.
Diekema, D. S. (2015). Responding to parental refusals to immunization of children. Pediatrics, 115, 1428–1431. https://doi.org/10.1542/peds.2005-0316
Driscoll, K. A., Wang, Y., Johnson, S. B., Lynch, R., Stephens, H., Willbur, K., Gill, E., Wright, N., & Deeb, L. C. (2016). White coat adherence in pediatric patients with type 1 diabetes who us insulin pumps. Journal of Diabetes Science and Technology, 10, 724–729. https://doi.org/10.1177/1932296815623568
Frew, P. M., Fisher, A. K., Basket, M. M., Chung, Y., Schamel, J., Weiner, J. L., Mullen, J., Omer, S. B., & Orenstein, W. A. (2016). Changes in childhood immunization decisions in the United States: Results from 2012 & 2014 National Parental Surveys. Vaccine, 34, 5689–5696. https://doi.org/10.1016/j.vaccine.2016.08.001
Hadley, L. G. P., Rouma, B. S., & Saad-Eldin, Y. (2012). Challenge of pediatric oncology in Africa. Seminars in Pediatric Surgery, 21, 136–141. https://doi.org/10.1053/j.sempedsurg.2012.01.006
Harrington, K. F., Zhang, B., Magruder, T., Bailey, W. C., & Gerald, L. B. (2015). The impact of parents’ health literacy on pediatric asthma outcomes. Pediatric Allergy, Immunology and Pulmonology, 28, 20–26. https://doi.org/10.1089/ped.2014.0379
Haselkorn, T., Lee, J. H., Mink, D. R., Weiss, S. T., & TENOR Study Group. (2008). Racial disparities in asthma-related health outcomes in severe or difficult-to-treat asthma. Annals of Allergy, Asthma & Immunology, 101, 256–263. https://doi.org/10.1016/s1081-1206(10)60490-5
Jenny, C., & Metz, J. B. (2020). Medical child abuse and medical neglect. Pediatrics in Review, 41, 49–60. https://doi.org/10.1542/pir.2017-0302
Jenny, C., & The Committee on Child Abuse and Neglect. (2007). Recognizing and responding to medical neglect. Pediatrics, 120, 1385–1389. https://doi.org/10.1542/peds.2007-2903
Jensen, A. R. (1979). Ethical issues in compliance. In R. B. Haynes, D. W. Taylor, & D. L. Sackett (Eds.), Compliance in health care (pp. 113–120). Johns Hopkins University Press.
King, N. M. P. (2009). Ethical issues in lifestyle change and adherence. In S. A. Shumaker, J. K. Ockene, & K. A. Riekert (Eds.), The handbook of health behavior change (3rd ed., pp. 757–770). Springer.
Lescano, C. M., Castillo, H. L., Calcano, E., Mayor, M., Porter, M., Rivera-Torgerson, Y., Dion, C., Marhefka, S. L., Barker, D., Brown, L. K., & The Latino STYLE Research Group. (2020). Latino STYLE: Preliminary findings from an HIV prevention RCT among Latino youth. Journal of Pediatric Psychology, 45, 411–422. https://doi.org/10.1093/jpepsy/jsaa019
McCabe, M. A. (1996). Involving children and adolescents in medical decision making: Developmental and clinical considerations. Journal of Pediatric Psychology, 21, 505–516. https://doi.org/10.1093/jpepsy/21.4.505
McCallum, G. B., Morris, P. S., Brown, N., & Chang, A. B. (2017). Culture-specific programs for children and adults from minority groups who have asthma. Cochrane Database of Systematic Review, (8)., Art. No: CD006580. https://doi.org/10.1002/14651858.CD006580.pub5
Modi, A. C., Ingerski, L. M., Rausch, J. R., Glauser, T. A., & Drotar, D. (2012). White coat adherence over the first year of therapy in pediatric epilepsy. The Journal of Pediatrics, 161, 695–699. https://doi.org/10.1016/j.jpeds.2012.03.059
Patel, N. U., Moore, B. A., Craver, R. F., & Feldman, S. R. (2016). Ethical considerations in adherence research. Patient Preference and Adherence, 10, 2429–2435. https://doi.org/10.2147/PPA.S117802
Phadke, V. K., Bednarczyk, R. A., Salmon, D. A., & Omer, S. B. (2016). Association between vaccine refusal and vaccine-preventable diseases in the United States a review of measles and pertussis. JAMA, 315, 1149–1158. https://doi.org/10.1001/jama.2016.1353
Poureslami, I., Nimmon, L., Doyle-Waters, M., Rootman, I., Schulzer, M., Kuramoto, L., et al. (2012). Effectiveness of educational interventions on asthma self-management in Punjabi and Chinese asthma patients: A randomized controlled trial. Journal of Asthma, 49, 542–551. https://doi.org/10.3109/02770903.2012.682125
Rae, W. A., Brunnqwell, D., & Sullivan, D. (2017). Ethical and legal issues in pediatric psychology. In M. C. Roberts & R. G. Steele (Eds.), Handbook of pediatric psychology (5th ed., pp. 14–25). Guilford Press.
Rapoff, M. A. (2013). E-health interventions in pediatrics. Clinical Practice in Pediatric Psychology, 1, 309–313. https://psycnet.apa.org/doi/10.1037/cpp0000038
Riekert, K. A., & Rand, C. S. (2002). Electronic monitoring of medication adherence: When is high-tech best? Journal of Clinical Psychology in Medical Settings, 9, 25–34. https://doi.org/10.1023/A:1014131928789
Roberts, G. M., Wheeler, G., Tucker, N. C., Hackler, C., Young, K., Maples, H. D., & Darville, T. (2004). Nonadherence with pediatric human immunodeficiency virus therapy as medical neglect. Pediatrics, 114, e346–e353. https://doi.org/10.1542/peds.2003-0588-f
Rosal, M. C., & Bodenlos, J. S. (2009). Culture and health-related behavior. In S. A. Shumaker, J. K. Ockene, & K. A. Riekert (Eds.), The handbook of health behavior change (pp. 39–58). Springer.
Sharifi, N., Adib-Hajbaghery, M., & Najafi, M. (2019). Cultural competence in nursing: A concept analysis. International Journal of Nursing Studies, 99, 1–8. https://doi.org/10.1016/j.ijnurstu.2019.103386
Stewart, M., King, M., Blood, R., Letourneau, N., Masuda, J. R., Anderson, S., & Bearskin, L. B. (2013). Health inequities experienced by Aboriginal children with respiratory conditions and their parents. Canadian Journal of Nursing Research, 45, 6–27. https://doi.org/10.1177/084456211304500302
Tan-McGrory, A., Madu, A. O., Kenst, K. S., & Betancourt, J. R. (2020). Engaging patients from diverse backgrounds in healthcare treatment. In A. Hadler, S. Sutton, & L. Osterberg (Eds.), The Wiley handbook of healthcare treatment engagement: Theory, research, and clinical practice (pp. 337–353). John Wiley & Sons.
Wu, Y. P., Steele, R. G., Connelly, M. A., Palermo, T. M., & Ritterband, L. M. (2014). Commentary: Pediatric e-health interventions: Common challenges during development, implementation, and dissemination. Journal of Pediatric Psychology, 39, 612–623. https://doi.org/10.1093/jpepsy/jsu022
Zebracki, K., Holzman, K., Bitter, K. J., Feehan, K., & Miller, M. L. (2007). Brief report: Use of complementary and alternative medicine and psychological functioning in Latino children with juvenile idiopathic arthritis or arthralgia. Journal of Pediatric Psychology, 32, 1006–1010. https://doi.org/10.1093/jpepsy/jsm033
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Rapoff, M.A., Duncan, C., Karlson, C. (2023). Cultural, Ethical, and Legal Issues Involved in Adherence Clinical and Research Activities. In: Adherence to Pediatric Medical Regimens. Issues in Clinical Child Psychology. Springer, Cham. https://doi.org/10.1007/978-3-031-27484-8_10
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DOI: https://doi.org/10.1007/978-3-031-27484-8_10
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