The transition of health care responsibility from parents to youth diagnosed with chronic illness: A developmental systems perspective

Families, Systems and Health

Volumn 32, Issue 2, 2014, Pages 219-234

  Reed Knight, Bonney ^a,b   Blount, Ronald L ^c   Gilleland, Jordan ^b,d  

^a Department of Transplant Services Children's Healthcare of Atlanta ^*  (United States)

^b EMORY UNIVERSITY SCHOOL OF MEDICINE   (United States)

^c UNIVERSITY OF GEORGIA   (United States)

^d AFLAC   (United States)

Author keywords

Adolescent; Chronic illness; Developmental systems; Transition

Indexed keywords

ADOLESCENT; CHILD PARENT RELATION; CHRONIC DISEASE; HEALTH CARE DELIVERY; HUMAN; PATIENT TRANSPORT; PROCEDURES; UNITED STATES; YOUNG ADULT;

ADOLESCENT; CHRONIC DISEASE; DELIVERY OF HEALTH CARE; HUMANS; PARENT-CHILD RELATIONS; PATIENT TRANSFER; UNITED STATES; YOUNG ADULT;

EID: 84902958763     PISSN: 10917527     EISSN: None     Source Type: Journal    
DOI: 10.1037/fsh0000039     Document Type: Article

References (55)

1. Anderson, B., Auslander, W. F., Jung, K. C., Miller, J. P., & Santiago, J. V. (1990). Assessing family sharing of diabetes responsibilities. Journal of Pediatric Psychology, 15, 477-492. doi:10.1093/jpepsy/15.4.477
2. Annunziato, R. A., Emre, S., Shneider, B., Barton, C., Dugan, C. A., & Shemesh, E. (2007). Adherence and medical outcomes in pediatric liver transplant recipients who transition to adult services. Pediatric Transplantation, 11, 608-614. doi:10.1111/j.1399-3046.2007.00689.x
3. Arnett, J. J. (2000). Emerging adulthood: A theory of development from the late teens through the twenties. American Psychologist, 55, 469-480. doi:10.1037/0003-066X.55.5.469
4. Bagner, D. M., Williams, L. B., Geffken, G. R., Silverstein, J. H., & Storch, E. A. (2007). Type 1 diabetes in youth: The relationship between adherence and executive functioning. Children's Health Care, 36, 169-179. doi:10.1080/02739610701335001
5. Baldassano, R. N., Ferry, G. D., Griffiths, A. M., Mack, D., Markowitz, J., & Winter, H. (2002). Transition of the patient with inflammatory bowel disease from pediatric to adult care: Recommendations of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition. Journal of Pediatric Gastroenterology and Nutrition, 34, 245-248. doi:10.1097/00005176-200203000-00001
6. Bell, L. E., Bartosh, S. M., Davis, C. L., Dobbels, F., Al Uzri, A., Lotstein, D.,. Dharnidharka, V. R. (2008). Adolescent transition to adult care in solid organ transplantation: A consensus conference report. American Journal of Transplantation, 8, 2230-2242. doi:10.1111/j.1600-6143.2008.02415.x
7. Blum, R. W. (1995). Transition to adult health care:Setting the stage. The Journal of Adolescent Health: Official publication of the Society for Adolescent Medicine, 17, 3-5.
8. Bryden, K. S., Neil, A., Mayou, R. A., Peveler, R. C., Fairburn, C. G., & Dunger, D. B. (1999). Eating habits, body weight, and insulin misuse. A longitudinal study of teenagers and young adults with type 1 diabetes. Diabetes Care, 22, 1956-1960. doi:10.2337/diacare.22.12.1956
9. Bryden, K. S., Peveler, R. C., Stein, A., Neil, A., Mayou, R. A., & Dunger, D. B. (2001). Clinical and psychological course of diabetes from adolescence to young adulthood: A longitudinal cohort study. Diabetes Care, 24, 1536-1540. doi:10.2337/diacare.24.9.1536
10. Cappelli, M., MacDonald, N. E., & McGrath, P. J. (1989). Assessment of readiness to transfer to adult care for adolescents with cystic fibrosis. Children's Health Care, 18, 218-224. doi:10.1207/s15326888chc1804_4
11. Cooley, W. C., & Sagerman, P. J. (2011). Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 128, 182-200. doi:10.1542/peds.2011-0969
12. DiMatteo, M. R. (2004). Variations in patients' adherence to medical recommendations: A quantitative review of 50 years of research. Medical Care, 42, 200-209. doi:10.1097/01.mlr.0000114908.90348.f9
13. El-Matary, W. (2009). Transition of children with inflammatory bowel disease: Big task, little evi-dence. World Journal of Gastroenterology, 15, 3744-3747. doi:10.3748/wjg.15.3744
14. Fishman, L. N., Barendse, R. M., Hait, E., Burdick, C., & Arnold, J. (2010). Self-management of older adolescents with inflammatory bowel disease: A pilot study of behavior and knowledge as prelude to transition. Clinical Pediatrics, 49, 1129-1133. doi:10.1177/0009922810379042
15. Fleming, E., Carter, B., & Gillibrand, W. (2002). The transition of adolescents with diabetes from the children's health care service into the adult health care service: A review of the literature. Journal of Clinical Nursing, 11, 560-567. doi:10.1046/j.1365-2702.2002.00639.x
16. Fredericks, E. M., Dore Stites, D., Well, A., Magee, J. C., Freed, G. L., Shieck, V., & James Lopez, M. (2010). Assessment of transition readiness skills and adherence in pediatric liver transplant recipients. Pediatric Transplantation, 14, 944-953. doi:10.1111/j.1399-3046.2010.01349.x
17. Fredericks, E. M., Magee, J. C., Opipari Arrigan, L., Shieck, V., Well, A., & Lopez, M. J. (2008). Adherence and health related quality of life in adolescent liver transplant recipients. Pediatric Transplantation, 12, 289-299. doi:10.1111/j.1399-3046.2008.00901.x
18. Gerson, A. C., Furth, S. L., Neu, A. M., & Fivush, B. A. (2004). Assessing associations between medication adherence and potentially modifiable psychosocial variables in pediatric kidney transplant recipients and their families. Pediatric Transplantation, 8, 543-550. doi:10.1111/j.1399-3046.2004.00215.x
19. Gilleland, J., Amaral, S., Mee, L. L., & Blount, R. L. (2012). Getting ready to leave: Transition readiness in adolescent kidney recipients. Journal of Pediatric Psychology, 37, 85-96. doi:10.1093/jpepsy/jsr049
20. Gray, W. N., Denson, L. A., Baldassano, R. N., & Hommel, K. A. (2012). Treatment adherence in adolescents with inflammatory bowel disease: The collective impact of barriers to adherence and anxiety/depressive symptoms. Journal of Pediatric Psychology, 37, 282-291. doi:10.1093/jpepsy/jsr092
21. Greenley, R. N., Doughty, A., Stephens, M., & Kugathasan, S. (2010). Brief report: Development of the Inflammatory Bowel Disease Family Responsibility Questionnaire. Journal of Pediatric Psychology, 35, 183-187. doi:10.1093/jpepsy/jsp052
22. Hait, E., Barendse, R. M., Arnold, J., Valim, C., Sands, B. E., Korzenik, J. R., & Fishman, L. N. (2009). Transition of adolescents with inflammatory bowel disease from pediatric to adult care: A survey of adult gastroenterologists. Journal of Pediatric Gastroenterology and Nutrition, 48, 61-65. doi:10.1097/MPG.0b013e31816d71d8
23. Hauser, S. T., Jacobson, A. M., Lavori, P., Wolfsdorf, J. I., Herskowitz, R. D., Milley, J. E.,. Stein, J. (1990). Adherence among children and adolescents with insulin-dependent diabetes mellitus over a four-year longitudinal follow-up: II. Immediate and long-term linkages with the family milieu. Journal of Pediatric Psychology, 15, 527-542. doi:10.1093/jpepsy/15.4.527
24. Hilliard, M. E., Guilfoyle, S. M., Dolan, L. M., & Hood, K. K. (2011). Prediction of adolescents' glycemic control 1 year after diabetes-specific family conflict: The mediating role of blood glucose monitoring adherence. Archives of Pediatrics & Adolescent Medicine, 165, 624-629. doi:10.1001/archpediatrics.2011.86
25. Jackson, E. S., Tucker, C. M., & Herman, K. C. (2007). Health value, perceived social support, and health self-efficacy as factors in a healthpromoting lifestyle. Journal of American College Health, 56, 69-74. doi:10.3200/JACH.56.1.69-74
26. Kahana, S. Y., Frazier, T. W., & Drotar, D. (2008). Preliminary quantitative investigation of predictors of treatment non adherence in pediatric transplantation:A brief report. Pediatric transplantation, 12, 656-660. doi:10.1111/j.1399-3046.2007.00864.x
27. La Greca, A. M., Auslander, W. F., Greco, P., Spetter, D., Fisher, E. B., & Santiago, J. V. (1995). I get by with a little help from my family and friends:Adolescents' support for diabetes care. Journal of Pediatric Psychology, 20, 449-476. doi:10.1093/jpepsy/20.4.449
28. La Greca, A. M., Follansbee, D., & Skyler, J. S. (1990). Developmental and behavioral aspects of diabetes management in youngsters. Children's Health Care, 19, 132-139. doi:10.1207/s15326888chc1903_1
29. Lichtwarck-Aschoff, A., van Geert, P., Bosma, H., & Kunnen, S. (2008). Time and identity: A framework for research and theory formation. Developmental Review, 28, 370-400. doi:10.1016/j.dr.2008.04.001
30. Lotstein, D. S., Ghandour, R., Cash, A., McGuire, E., Strickland, B., & Newacheck, P. (2009). Planning for health care transitions: Results from the 2005-2006 National Survey of Children with Special Health Care Needs. Pediatrics, 123, e145-e152. doi:10.1542/peds.2008-1298
31. Luton, L. M., Reed-Knight, B. Loiselle, K., O'Toole, K., & Blount, R. (2011). A pilot study evaluating an abbreviated version of the cognitive remediation program for youth with neurocognitive deficits. Brain Injury, 25, 409-415. doi:10.3109/02699052.2011.558044
32. McManus, M. A., Pollack, L. R., Cooley, W. C., McAllister, J. W., Lotstein, D., Strickland, B., & Mann, M. Y. (2013). Current status of transition preparation among youth with special needs in the United States. Pediatrics, 131, 1090-1097. doi:10.1542/peds.2012-3050
33. McNally, K., Rohan, J., Pendley, J. S., Delamater, A., & Drotar, D. (2010). Executive functioning, treatment adherence, and glycemic control in children with type 1 diabetes. Diabetes Care, 33, 1159-1162. doi:10.2337/dc09-2116
34. Modi, A. C., Marciel, K. K., Slater, S. K., Drotar, D., & Quittner, A. L. (2008). The influence of parental supervision on medical adherence in adolescents with cystic fibrosis: Developmental shifts from pre to late adolescence. Children's Health Care, 37, 78-92. doi:10.1080/02739610701766925
35. Naar-King, S., Montepiedra, G., Nichols, S., Farley, J., Garvie, P. A., Kammerer, B.,. Storm, D. (2009). Allocation of family responsibility for illness management in pediatric HIV. Journal of Pediatric Psychology, 34, 187-194. doi:10.1093/jpepsy/jsn065
36. National Health Care Transition Center. (2011). Six core elements of health care transition, 2012. Retrieved from http://www.gottransition.org/Uploaded Files/Files/Six_core_Elements_PDF_Package1.pdf
37. Pai, A. L. H., Gray, E., Kurivial, K., Ross, J., Schoborg, D., & Goebel, J. (2010). The Allocation of Treatment Responsibility scale: A novel tool for assessing patient and caregiver management of pediatric medical treatment regimens. Pediatric Transplantation, 14, 993-999. doi:10.1111/j.1399-3046.2010.01391.x
38. Pai, A. L. H., & Ostendorf, H. M. (2011). Treatment adherence in adolescents and young adults affected by chronic illness during the health care transition from pediatric to adult health care: A literature review. Children's Health Care, 40, 16-33. doi:10.1080/02739615.2011.537934
39. Patton, S. R., Graham, J. L., Varlotta, L., & Holsclaw, D. (2003). Measuring self-care independence in children with cystic fibrosis: The self-care independence scale (SCIS). Pediatric Pulmonology, 36, 123-130. doi:10.1002/ppul.10271
40. Perrin, J. M., Bloom, S. R., & Gortmaker, S. L. (2007). The increase of childhood chronic conditions in the United States. Journal of the American Medical Association, 297, 2755-2759. doi:10.1001/jama.297.24.2755
41. Reed-Knight, B., Lewis, J. D., & Blount, R. L. (2011). Association of disease, adolescent, and family factors with medication adherence in pediatric Inflammatory Bowel Disease. Journal of Pediatric Psychology, 36, 308-317. doi:10.1093/jpepsy/jsq076
42. Reiss, J. G. (2012). Health care transition for emerging adults with chronic health conditions and disabilities. Pediatric Annals, 41, 429-435. doi:10.3928/00904481-20120924-16
43. Reiss, J. G., Gibson, R. W., & Walker, L. R. (2005). Health care transition: Youth, family, and provider perspectives. Pediatrics, 115, 112-120. doi:10.1542/peds.2004-1321
44. Rodrigue, J. R., & Zelikovsky, N. (2009). Pediatric organ transplantation. In M. C. Roberts & R. G. Steele (Eds.), Handbook of pediatric psychology (4th ed., pp. 392-402). New York, NY: Guilford Press.
45. Sawicki, G. S., Lukens-Bull, K., Yin, X., Demars, N., Huang, I., Livingwood, W.,. Wood, D. (2011). Measuring the transition readiness of youth with special healthcare needs: Validation of the TRAQ-Transition Readiness Assessment Questionnaire. Journal of Pediatric Psychology, 36, 160-171. doi:10.1093/jpepsy/jsp128
46. Schwartz, L. A., Tuchman, L. K., Hobbie, W. L., & Ginsberg, J. P. (2011). A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Child: Care, Health and Development, 37, 883-895. doi:10.1111/j.1365-2214.2011.01282.x
47. Schwarzer, R., & Luszczynska, A. (2008). How to overcome health-compromising behaviors. European Psychologist, 13, 141-151. doi:10.1027/1016-9040.13.2.141
48. Simons, L. E., & Blount, R. L. (2007). Identifying barriers to medication adherence in adolescent transplant recipients. Journal of Pediatric Psychology, 32, 831-844. doi:10.1093/jpepsy/jsm030
49. Tucker, C. M., Petersen, S., Herman, K. C., Fennell, R. S., Bowling, B., Pedersen, T., & Vosmik, J. R. (2001). Self-regulation predictors of medication adherence among ethnically different pediatric patients with renal transplants. Journal of Pediatric Psychology, 26, 455-464. doi:10.1093/jpepsy/26.8.455
50. Watson, A. R. (2000). Non-compliance and transfer from paediatric to adult transplant unit. Pediatric Nephrology, 14, 469-472. doi:10.1007/s004670050794
51. While, A., Forbes, A., Ullman, R., Lewis, S., Mathes, L., & Griffiths, P. (2004). Good practices that address continuity during transition from child to adult care: Synthesis of the evidence. Child: Care, Health and Development, 30, 439-452. doi:10.1111/j.1365-2214.2004.00440.x
52. Willoughby, L. M., Fukami, S., Bunnapradist, S., Gavard, J. A., Lentine, K. L., Hardinger, K. L.,. Schnitzler, M. A. (2007). Health insurance considerations for adolescent transplant recipients as they transition to adulthood. Pediatric Transplantation, 11, 127-131. doi:10.1111/j.1399-3046.2006.00639.x
53. Wise, P. H. (2007). The future pediatrician: The challenge of chronic illness. Journal of Pediatrics, 151, S6-S10. doi:10.1016/j.jpeds.2007.08.013
54. Wysocki, T., Harris, M. A., Buckloh, L. M., Mertlich, D., Lochrie, A. S., Taylor, A.,. 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, 928-938. doi:10.1093/jpepsy/jsj098
55. Wysocki, T., Harris, M. A., Buckloh, L. M., Mertlich, D., Lochrie, A. S., Taylor, A.,. White, N. H. (2008). Randomized, controlled trial of Behavioral Family Systems Therapy for diabetes:Maintenance and generalization of effects on parent-adolescent communication. Behavior Therapy, 39, 33-46.