Skip to main content

Considering Culture: A Review of Pediatric Behavioral Intervention Research in Type 1 Diabetes


Purpose of Review

Type 1 diabetes (T1D) incidence in youth is growing across all racial/ethnic backgrounds, with the most marked increase in African-American youth under 5. Underrepresented racial/ethnic minorities are at an increased risk for health complications. This review focuses on the reported disparities, demographics of samples in behavioral interventions, and study design considerations.

Recent Findings

Recruitment data from two ongoing behavioral intervention trials for young children with T1D are presented to compare enrolled/non-enrolled individuals and to discuss culturally appropriate study design considerations. Data were compared to the demographics of children (ages 1–6) with T1D in the clinic populations from the recruitment sites.


Enrolling a representative sample and designing culturally appropriate behavioral interventions are important for generalizability, yet there is a gap between the individuals participating in T1D research and those who are most negatively affected by T1D. Suggestions are offered for ways to expand inclusion of diverse samples in behavioral intervention research in T1D.

This is a preview of subscription content, access via your institution.


Papers of particular interest, published recently, have been highlighted as: Of importance •• Of major importance

  1. 1.

    Dabelea D, Mayer-Davis EJ, Saydah S, et al. Prevalence of type 1 and type 2 diabetes among children and adolescents from 2001 to 2009. 2014;311(17):1778–86.

  2. 2.

    Stanescu DE, Lord K, Lipman TH. The epidemiology of type 1 diabetes in children. Endocrinol Metab Clin N Am. 2012;41(4):679–94.

    Article  Google Scholar 

  3. 3.

    • Lado JJ, Lipman TH. Racial and ethnic disparities in the incidence, treatment, and outcomes of youth with type 1 diabetes. Endocrinol Metab Clin N Am. 2016;45(2):453–61. This article clearly outlines some of the racial and ethnic disparities that currently affect youth with T1D.

    Article  Google Scholar 

  4. 4.

    Lipman TH, Katz LE, Ratcliffe S, Fadia S, Difazio D, Murphy KM, et al. Continued marked rise in the incidence of type 1 diabetes in young children in Philadelphia. Diabetes. 2014;63:A45.

    Article  Google Scholar 

  5. 5.

    • Naranjo D, Schwartz DD, Delamater AM. Diabetes in ethnically diverse youth: disparate burden and intervention approaches. Curr Diabetes Rev. 2015;11(4):251–60. This study categorizes and describes the potential factors that play into the disparities affecting youth with T1D as individual, contextual, and systemic.

    PubMed  Article  Google Scholar 

  6. 6.

    Mayer-Davis EJ, Beyer J, Bell RA, Dabelea D, D’Agostino R, Imperatore G, et al. Diabetes in African American youth: prevalence, incidence, and clinical characteristics: the SEARCH for Diabetes in Youth Study. Diabetes Care. 2009;32(Suppl 2):S112–22.

    PubMed  PubMed Central  Article  Google Scholar 

  7. 7.

    American Diabetes Association. 2. Classification and diagnosis of diabetes: standards of medical care in diabetes—2018. Diabetes Care. 2018;41(Supplement 1):S13–S27.

  8. 8.

    Lawrence JM, Mayer-Davis EJ, Reynolds K, Beyer J, Pettitt DJ, D’agostino RB, et al. Diabetes in hispanic American youth. Diabetes Care. 2009;32(Supplement 2):S123–32.

    PubMed  PubMed Central  Article  Google Scholar 

  9. 9.

    Willi SM, Miller KM, DiMeglio LA, Klingensmith GJ, Simmons JH, Tamborlane WV, et al. Racial-ethnic disparities in management and outcomes among children with type 1 diabetes. Pediatrics. 2015;135(3):424–34.

    PubMed  PubMed Central  Article  Google Scholar 

  10. 10.

    Lipton R, Good G, Mikhailov T, Freels S, Donoghue E. Ethnic differences in mortality from insulin-dependent diabetes mellitus among people less than 2 years of age. Pediatrics. 1999;103(5):952–6.

    CAS  PubMed  Article  Google Scholar 

  11. 11.

    Lord JH, Young MT, Gruhn MA, Grey M, Delamater AM, Jaser SS. Effect of race and marital status on mothers’ observed parenting and adolescent adjustment in youth with type 1 diabetes. J Pediatr Psychol. 2015;40(1):132–43.

    PubMed  Article  Google Scholar 

  12. 12.

    Caccavale L, Weaver P, Chen R, Streisand R, Holmes C. Family density and SES related to diabetes management and glycemic control in adolescents with type 1 diabetes. J Pediatr Psychol. 2016;40(5):500–8.

    Article  Google Scholar 

  13. 13.

    Thornton RLJ, Glover CM, Cené CW, Glik DC, Henderson JA, Williams DR. Evaluating strategies for reducing health disparities by addressing the social determinants of health. Health Aff. 2016;35(8):1416–23.

    Article  Google Scholar 

  14. 14.

    Valenzuela JM, la Greca AM, Hsin O, Taylor C, Delamater AM. Prescribed regimen intensity in diverse youth with type 1 diabetes: role of family and provider perceptions. Pediatr Diabetes. 2011;12(8):696–703.

    PubMed  Article  Google Scholar 

  15. 15.

    Burge M, et al. Continuous glucose monitoring: the future of diabetes management. Diabetes Spectr. 2008;21(2):112–9.

    Article  Google Scholar 

  16. 16.

    Powell P. Ethnic effects on biological, psychosocial and disease care factors in African-American youth with type 1 diabetes. 2009.

  17. 17.

    Powell PW, Chen R, Kumar A, Streisand R, Holmes CS. Sociodemographic effects on biological, disease care, and diabetes knowledge factors in youth with type 1 diabetes. J Child Health Care. 2013;17(2):174–85.

    PubMed  Article  Google Scholar 

  18. 18.

    Kaufman FR, Halvorson M, Carpenter S. Association between diabetes control and visits to a multidisciplinary pediatric diabetes clinic. Pediatrics. 1999;103(5):948–51.

    CAS  PubMed  Article  Google Scholar 

  19. 19.

    Holmes CS, Swift EE, Chen R, Hershberger A. Demographic risk factors, mediators, and moderators in youths’ diabetes metabolic control. Ann Behav Med. 2006;32(1):39–49.

    PubMed  Article  Google Scholar 

  20. 20.

    Ellis DA, Podolski CL, Frey M, Naar-King S, Wang B, Moltz K. The role of parental monitoring in adolescent health outcomes: impact on regimen adherence in youth with type 1 diabetes. J Pediatr Psychol. 2007;32(8):907–17.

    PubMed  Article  Google Scholar 

  21. 21.

    Gaylord-Harden NK, Elmore CA, Campbell CL, Wethington A. An examination of the tripartite model of depressive and anxiety symptoms in African American youth: stressors and coping strategies as common and specific correlates. J Clin Child Adolesc Psychol. 2011;40(3):360–74.

    PubMed  Article  Google Scholar 

  22. 22.

    Hilliard ME, Yi-Frazier JP, Hessler D, Butler AM, Anderson BJ, Jaser S. Stress and A1c among people with diabetes across the lifespan. Curr Diab Rep. 2016;16(8):1–10.

    CAS  Article  Google Scholar 

  23. 23.

    Duke DC, Harris MA. Executive function, adherence, and glycemic control in adolescents with type 1 diabetes: a literature review. Curr Diab Rep. 2014;14(10):532.

    PubMed  Article  Google Scholar 

  24. 24.

    Holmes C, et al. Predictors of youth diabetes care behaviors and metabolic control: a structural equation modeling approach. J Pediatr Psychol. 2006;31(8):770–84.

    PubMed  Article  Google Scholar 

  25. 25.

    McNally K, Rohan J, Pendley JS, Delamater A, Drotar D. Executive functioning, treatment adherence, and glycemic control in children with type 1 diabetes. Diabetes Care. 2010;33(6):1159–62.

    PubMed  PubMed Central  Article  Google Scholar 

  26. 26.

    Zilioli S, Ellis DA, Carré JM, Slatcher RB. Biopsychosocial pathways linking subjective socioeconomic disadvantage to glycemic control in youths with type I diabetes. Psychoneuroendocrinology. 2017;78:222–8.

    PubMed  Article  Google Scholar 

  27. 27.

    Sue S, Zane N, Nagayama Hall GC, Berger LK. The case for cultural competency in psychotherapeutic interventions. Annu Rev Psychol. 2009;60:525–48.

    PubMed  PubMed Central  Article  Google Scholar 

  28. 28.

    Hamman RF, Bell RA, Dabelea D, D’Agostino RB Jr, Dolan L, Imperatore G, et al. SEARCH for diabetes in youth study group. The SEARCH for diabetes in youth study: rationale, findings, and future directions. Diabetes Care. 2014;37:3336–44.

    PubMed  PubMed Central  Article  Google Scholar 

  29. 29.

    Hood KK, Rohan JM, Peterson CM, Drotar D. Interventions with adherence-promoting components in pediatric type 1 diabetes: meta-analysis of their impact on glycemic control. Diabetes Care. 2010;33(7):1658–64.

    PubMed  PubMed Central  Article  Google Scholar 

  30. 30.

    Borshuk AP, Everhart RS. Health disparities among youth with type 1 diabetes: a systematic review of the current literature. Fam Syst Health. 2015;33(3):297–313.

    Article  Google Scholar 

  31. 31.

    Hudson BF, Oostendorp LJM, Candy B, Vickerstaff V, Jones L, Lakhanpaul M, et al. The under reporting of recruitment strategies in research with children with life-threatening illnesses: a systematic review. Palliat Med. 2017;31(5):419–36.

    PubMed  Article  Google Scholar 

  32. 32.

    Hilliard ME, Tully C, Monaghan M, Wang J, Streisand R. Design and development of a stepped-care behavioral intervention to support parents of young children newly diagnosed with type 1 diabetes. Contemp Clin Trials. 2017;62:1–10.

    PubMed  Article  Google Scholar 

  33. 33.

    Herbert LJ, Gillespie C, Monaghan M, Holmes C, Streisand R. Factors associated with recruitment and retention in randomized controlled trials of behavioral interventions for patients with pediatric type 1 diabetes. J Clin Psychol Med Settings. 2016;23(2):112–25.

    PubMed  Article  Google Scholar 

  34. 34.

    The T1D Exchange Clinic Registry. 2017 Available from:

  35. 35.

    Waheed W, Hughes-Morley A, Woodham A, Allen G, Bower P. Overcoming barriers to recruiting ethnic minorities to mental health research: a typology of recruitment strategies. BMC Psychiatry. 2015;15:101.

    PubMed  PubMed Central  Article  Google Scholar 

  36. 36.

    Vissenberg C, Nierkens V, Uitewaal PJM, Middelkoop BJC, Stronks K. Recruitment and retention in a 10-month social network-based intervention promoting diabetes self-management in socioeconomically deprived patients: a qualitative process evaluation. BMJ Open. 2017;7(7):e012284.

    PubMed  PubMed Central  Article  Google Scholar 

  37. 37.

    Coutinho MT, Koinis-Mitchell D, Kopel SJ, Romero-Bosch L, Lobato D, McQuaid EL, et al. Factors associated with recruitment and retention of diverse children with asthma. Child Health Care. 2014;43(2):132–50.

    PubMed  PubMed Central  Article  Google Scholar 

  38. 38.

    Merlin JS, Walcott M, Kerns R, Bair MJ, Burgio KL, Turan JM. Pain self-management in HIV-infected individuals with chronic pain: a qualitative study. Pain Med. 2015;16(4):706–14.

    PubMed  PubMed Central  Article  Google Scholar 

  39. 39.

    George S, Duran N, Norris K. A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific islanders. Am J Public Health. 2014;104(2):e16–31.

    PubMed  PubMed Central  Article  Google Scholar 

  40. 40.

    Sheridan S, Schrandt S, Forsythe L, Hilliard T, Paez KA. The PCORI engagement rubric: promising practices for partnering in research. Ann Fam Med. 2017;15:165–70.

    PubMed  PubMed Central  Article  Google Scholar 

  41. 41.

    Nastasi BK, Varjas K, Schensul SL, Silva KT, Schensul JJ, Ratnayake P. The participatory intervention model: a framework for conceptualizing and promoting intervention acceptability. Sch Psychol Q. 2000;15(2):207–32.

    Article  Google Scholar 

  42. 42.

    Lau AS. Making the case for selective and directed cultural adaptations of evidence-based treatments: examples from parent training. Clin Psychol Sci Pract. 2006;13(4):295–310.

    Article  Google Scholar 

  43. 43.

    Livaudais JC, Thompson B, Islas I, Ibarra G, Godina R, Coronado GD. Type 2 diabetes among rural Hispanics in Washington state: perspectives from community stakeholders. Health Promot Pract. 2010;11(4):589–99.

    PubMed  PubMed Central  Article  Google Scholar 

  44. 44.

    Henggeler SW, Schoenwald SK, Borduin CM, Rowland MD, & Cunningham PB. Multisystemic therapy for antisocial behavior in children and adolescents. Guilford Press; 2009

  45. 45.

    Smith, A. The smartphone difference. 2015; Available from:

    Google Scholar 

  46. 46.

    Lopez L, Green AR, Tan-McGrory A, King R, Betancourt JR. Bridging the digital divide in health care: the role of health information technology in addressing racial and ethnic disparities. Jt Comm J Qual Patient Saf. 2011;37(10):437–45.

    PubMed  Article  Google Scholar 

  47. 47.

    Whittemore R, et al. Development of an internet coping skills training program for teenagers with type 1 diabetes. Comput Inform Nurs. 2010;28(2):103–11.

    PubMed  PubMed Central  Article  Google Scholar 

  48. 48.

    Fedele DA, Cushing CC, Fritz A, Amaro CM, Ortega A. Mobile health interventions for improving health outcomes in youth: a meta-analysis. JAMA Pediatr. 2017;171(5):461–9.

    PubMed  Article  Google Scholar 

  49. 49.

    Whittemore R, Jaser SS, Faulkner MS, Murphy K, Delamater A, Grey M, et al. Type 1 diabetes eHealth psychoeducation: youth recruitment, participation, and satisfaction. J Med Internet Res. 2013;15(1):e15.

    PubMed  PubMed Central  Article  Google Scholar 

  50. 50.

    Horrigan JB. The numbers behind the broadband “homework gap”. Pew Research Center Fact Tank 2015; Available from:

  51. 51.

    Herbert L, Owen V, Pascarella L, Streisand R. Text message interventions for children and adolescents with type 1 diabetes: a systematic review. Diabetes Technol Ther. 2013;15(5):362–70.

    PubMed  Article  Google Scholar 

  52. 52.

    Cole-Lewis H, Kershaw T. Text messaging as a tool for behavior change in disease prevention and management. Epidemiol Rev. 2010;32:56–69.

    PubMed  PubMed Central  Article  Google Scholar 

  53. 53.

    Corbie-Smith G, Henderson G, Blumenthal C, Dorrance J, Estroff S. Conceptualizing race in research. J Natl Med Assoc. 2008;100(10):1235–43.

    PubMed  PubMed Central  Article  Google Scholar 

  54. 54.

    Ford CL, Airhihenbuwa CO. Critical race theory, race equity, and public health: toward antiracism praxis. Am J Public Health. 2010;100(S1):S30–5.

    PubMed  PubMed Central  Article  Google Scholar 

Download references


This work was supported in part by DP3DK103998 (RS) and R01DK102561 (MH and RS).

Author information



Corresponding author

Correspondence to Randi Streisand.

Ethics declarations

Conflict of Interest

Meredith Rose, Laura Aronow, Sarah Breen, Carrie Tully, Marisa E. Hilliard, Ashley M. Butler, and Randi Streisand declare that they have no conflict of interest.

Human and Animal Rights and Informed Consent

All reported studies/experiments with human or animal subjects performed by the authors have been previously published and complied with all applicable ethical standards (including the Helsinki declaration and its amendments, institutional/national research committee standards, and international/national/institutional guidelines).

Additional information

This article is part of the Topical Collection on Psychosocial Aspects

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Rose, M., Aronow, L., Breen, S. et al. Considering Culture: A Review of Pediatric Behavioral Intervention Research in Type 1 Diabetes. Curr Diab Rep 18, 16 (2018).

Download citation


  • Diversity
  • Type 1 diabetes
  • Research
  • Cultural competence