References

1. Patterson J, Blum RJ. Risk and resilience among children and youth with disabilities. Arch Pediatr Adolesc Med 1996; 150:692-98.

2. Lurie S, Shemesh E, Sheiner PA, et al. Nonadherence in pediatric liver transplant recipients—an assessment if risk factors and natural history. Pediatr Transplant 2000; 4:200-6.

3. Greydanus D. American Academy of Pediatrics. Parenting an Adolescent. In: Caring for your Adolescent: Ages 12 to 21. 1st ed. New York: Bantam Books, 1991:3-40.

4. Steinberg L, Mounts N, Lamborn S, Dornbusch S. Authoritative parenting and adolescent adjustment across varied ecological niches. J Res Adol 1991; 1:19-36.

5. Gellerstedt ME, leRoux P, Litt D. Beyond anticipatory guidance-parenting and the family life cycle. Pediatric Clinics of North America 1995; 42:65-78.

6. Coupey S, Neinstein L, Zeltzer L. Chronic Illness in the Adolescent. In: Neinstein LS. Adolescent Health-care-A Practical Guide. 4th ed. Philadelphia: Lippincott Williams & Wilkins, 2002:1511-36.

7. Olson D. Circumplex Model: Systemic Assessment and Treatment of Families. In: Circumplex Model of Family Systems VIII: Family Assessment and Intervention. The Haworth Press, Inc. 1989:7-49.

8. Patterson J, Blum RW. Risk and resilience among children and youth with disabilities. Arch Pediatr Adolesc Med 1996; 150:692-8.

9. McCubbin HI, Patterson J. The Family Stress Process: The Double ABCX Model of Family Adjustment and Adaptation. In: McCubbin HI, Sussman M, Patterson JM, eds. Social Stress and the Family: Advances and developments in family stress theory and research. New York: Haworth, 1983.

10. Patterson J. Families Experiencing Stress: I. The Family adjustment and adaptation response model; ii. applying the FAAR model to health-related issues for intervention and research. Fam Syst Med 1988; 6:202-37.

11. Goldenring JM, Cohen E. Getting into adolescent heads. Contemp Pediatr 1988; July:7590.

12. Waters E, Stewart-Brown S, Fitzpatrick R. Agreement between adolescent self-report and parent reports of health and well-being: results of an epidemiological study. Child Care Health dev 2003; 29:501-9.

13. Palmero TM, Zebracki K, Cox S, Newman AJ, Singer NG. Juvenile Idiopathic Arthritis: Parent-child discrepancy on reports of pain and disability. J Rheumatol 2004; 31:1840-6.

14. Brunner HI, Klein-Gitelman MS, Miller MJ, Trombley M, Baldwin N, Kress A, et al. Health of children with chronic arthritis: relationship of different measures and the quality of parent proxy reporting. Arthritis Care Res 2004; 51:763-73.

15. Cuneo KM, Schiaffino KM. Adolescent self-perceptions of adjustment to childhood arthritis: the influence of disease activity, family resources, and parent adjustment. J Adolesc Health. 2002; 31:363-71.

16. Varni JW, Seid M, Smith Knight T, Burwinkle T, Brown J, Szer IS. The PedsQL™ in pediatric rheumatology. Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory™ Generic Core Scales and Rheumatology Module. Arthritis Rheum 2002; 46:714-25.

17. Doherty E, Yanni G, Conroy RM, Bresnihan B. A comparison of child and parent ratings of disability and pain in juvenile chronic arthritis. J Rheumatol 1993; 20:1563-6.

18. Singh G, Athreya B, Fries J, Goldsmith DP, Ostrov BE. Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis Rheum 1994; 37:1761-9.

19. Duffy CM, Arsenault L, Watanabe Duffy KN. Level of agreement between parents and children in rating dysfunction in juvenile rheumatoid arthritis and juvenile spondyloarthritides. J Rheumatol 1993; 20:2134-9.

20. Howe S, Levinson J, Shear E, et al. Development of a disability measurement tool for juvenile rheumatoid arthritis. The Juvenile Arthritis Functional assessment Report for children and their parents. Arthritis Rheum 1991; 34:873-80.

21. Shaw KL, Southwood TR, McDonagh JE. Growing up and moving on in Rheumatology: parents as proxies of adolescents with Juvenile Idiopathic Arthritis. Arthritis Care Res 2006; 55(2):189-98.

22. Coleman JC, Hendry L. The Nature of Adolescence. London, UK: Routledge; 1999.

23. Heaven PCL. Contemporary Adolescence: A Social Psychological Approach. Basingstoke, UK: The MacMillan Press, 1994.

24. Shaw KL, Southwood TR, McDonagh JE. Users' perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology 2004; 43: 770-8.

25. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002; 110:1304-6.

26. Department of Health. Getting the right start: National Service Framework for Children, Young People and Maternity Serivces: Standard for Hospital Services. April 2003.

27. Shaw KL, Southwood TR, McDonagh JE. Developing a Programme of Transitional Care for Adolescents with Juvenile Idiopathic Arthritis: Results of a Postal Survey. Rheumatology 2004; 43:211-9.

28. Durst CL, Horn MV, MacLaughlin EF, Bowmand CM, Starnes VA, Woo MS. Psychosocial responses of adolescent cystic fibrosis patients to lung transplantation. Pediatr Transplant 2001; 5:27-31.

29. Ehrich JHH, Rizzoni G, Broyer M, et al. Rehabilitation of young adults during renal replacement therapy in Europe 2. Schooling, employment and social situation. Nephrol Dial Transplant 1992; 7:573-8.

30. Geenen SJ, Powers LE, Sells W. Understanding the role of health care providers during transition of adolescents with disabilities and special health care needs. J Adolesc Health 2003; 32:225-33.

31. Gold L, Kirkpatrick B, Fricker F, Zitelli B. Psychosocial issues in pediatric organ transplantation: parent's perspective. Pediatrics 1986; 77:738-44.

32. Paone MC, Wigle M, Saewyc E. The ON TRAC model for transitional care of adolescents. Prog Transplant 2006; 16:291-302.

33. McDonagh JE, Southwood TR, Shaw KL. Growing up and moving on in rheumatology: development and preliminary evaluation of a transitional care programme for a multicentre cohort of adolescents with juvenile idiopathic arthritis. J Child Health-care 2006; 10(1):22-42.

34. Reiss JG, Gibson RW, Walker LR. Health-care transition: youth, family, and provider perspectives. Pediatrics 2005; 115:112-20.

35. Royal College of Nursing. Adolescent transition care: guidance for nursing staff. 2004, London (www.rcn.org.uk).

36. Kieckhefer GM, Trahms CM. Supporting development of children with chronic conditions: from compliance toward shared management. Pediatr Nursing 2000; 26:354-63.

37. McPherson A, MacFarlane A. Teenagers: the agony, the ecstasy, the answers. Time Warner: London, 2000.

0 0

Post a comment