An assessment of the experiences and needs of adolescents with chronic conditions in transitional care: a qualitative study to develop a patient education programme

Health and Social Care in the Community

Volumn 25, Issue 2, 2017, Pages 652-666

  Bomba, Franziska ^a   Herrmann Garitz, Carsten ^b   Schmidt, Julia ^a   Schmidt, Silke ^b   Thyen, Ute ^a  

^a UNIVERSITY OF LÜBECK   (Germany)

^b UNIVERSITY OF GREIFSWALD   (Germany)

Author keywords

adolescents with chronic health conditions; empowerment; group training; patient education; qualitative research; transition

Indexed keywords

ADOLESCENT; ADULT; CHRONIC DISEASE; FEMALE; GERMANY; HEALTH SERVICE; HUMAN; INTERVIEW; MALE; PATIENT EDUCATION; QUALITATIVE RESEARCH; SOCIAL SUPPORT; SWITZERLAND; TRANSITIONAL CARE; YOUNG ADULT;

ADOLESCENT; ADULT; CHRONIC DISEASE; FEMALE; GERMANY; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; INTERVIEWS AS TOPIC; MALE; PATIENT EDUCATION AS TOPIC; QUALITATIVE RESEARCH; SOCIAL SUPPORT; SWITZERLAND; TRANSITIONAL CARE; YOUNG ADULT;

EID: 85011931458     PISSN: 09660410     EISSN: 13652524     Source Type: Journal    
DOI: 10.1111/hsc.12356     Document Type: Article

References (64)

1. Akre C. & Suris J.C. (2014) From controlling to letting go: what are the psychosocial needs of parents of adolescents with a chronic illness? Health Education Research 29, 764–772.
2. Ambresin A.-E., Bennett K., Patton G.C., Sanci L.A. & Sawyer S.M. (2013) Assessment of youth-friendly health care: a systematic review of indicators drawn from young people's perspectives. Journal of Adolescent Health 52, 670–681.
3. Ammerlaan J.W., Scholtus L.W., Bijlsma H.J.W.J., Prakken B.J. & Kruize A.A. (2013) An urge for change: transitional care for young adults with juvenile idiopathic arthritis. Patient Education and Counseling 92, 127–129.
4. Anderson R.M. & Funnell M.M. (2010) Patient empowerment: myths and misconceptions. Patient Education and Counseling 79, 277–282.
5. Anderson B.J. & Wolpert H.A. (2004) A developmental perspective on the challenges of diabetes education and care during the young adult period. Patient Education and Counseling 53, 347–352.
6. Applebaum M.A., Lawson E.F. & von Scheven E. (2013) Perception of transition readiness and preferences for use of technology in transition programs: teens’ ideas for the future. International Journal of Adolescent Medicine and Health 25, 119–125.
7. Aujoulat I., d'Hoore W. & Deccache A. (2007) Patient empowerment in theory and practice: polysemy or cacophony? Patient Education and Counseling 66, 13–20.
8. Badlan K. (2006) Young people living with cystic fibrosis: an insight into their subjective experience. Health & Social Care in the Community 14, 264–270.
9. Blum R.W., Garell D., Hodgman C.H. et al. (1993) Transition from child-centered to adult health care systems for adolescents with chronic conditions: a Position Paper of the Society for Adolescent Medicine. Journal of Adolescent Health 14, 570–576.
10. Blum R.W., Hirsch D., Kastner T.A. et al. (2002) A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 110, 1304–1306.
11. Brooks F. & Shemmings D. (2008) Health and social care needs of children and young people. Health & Social Care in the Community 16, 219–221.
12. Brumfield K. & Lansbury G. (2004) Experiences of adolescents with Cystic Fibrosis during their transition from paediatric to adult health care: a qualitative study of young Australian adults. Disability and Rehabilitation 26, 223–234.
13. Bruzzese J.M., Bonner S., Vincent E.J. et al. (2004) Asthma education: the adolescent experience. Patient Education and Counseling 55, 396–406.
14. Busse F.P., Hiermann P., Galler A. et al. (2007) Evaluation of patients’ opinion and metabolic control after transfer of young adults with type 1 diabetes from a pediatric diabetes clinic adult care. Hormone Research 67, 132–138.
15. Calsbeek H., Rijken M., Bekkers M.J., Dekker J. & Henegoutwen G.P.V. (2006) School and leisure activities in adolescents and young adults with chronic digestive disorders: impact of burden of disease. International Journal of Behavioral Medicine 13, 121–130.
16. Crowley R., Wolfe I., Lock K. & McKee M. (2011) Improving the transition between paediatric and adult healthcare: a systematic review. Archives of Disease in Childhood 96, 548–553.
17. Crump C., Rivera D., London R., Landau M., Erlendson B. & Rodriguez E. (2013) Chronic health conditions and school performance among children and youth. Annals of Epidemiology 23, 179–184.
18. Department of Health; Child Health and Maternity Services Branch (2006) Transition: Getting it Right for Young People. Improving the Transition of Young People with Long Term Conditions from Children's to Adult Health Services. Department of Health Publications, London.
19. Devine K.A., Wasserman R.M., Gershenson L.S., Holmbeck G.N. & Essner B.S. (2011) Mother-adolescent agreement regarding decision-making autonomy: a longitudinal comparison of families of adolescents with and without spina bifida. Journal of Pediatric Psychology 36, 277–288.
20. Dovey-Pearce G., Hurrell R., May C., Walker C. & Doherty Y. (2005) Young adults’ (16-25 years) suggestions for providing developmentally appropriate diabetes services: a qualitative study. Health & Social Care in the Community 13, 409–419.
21. Faller H., Reusch A. & Meng K. (2011) DGRW-Update: Patientenschulung [DGRW-Update: Patient Education]. Die Rehabilitation 50, 284–291.
22. Fletcher-Johnston M., Marshall S.K. & Straatman L. (2011) Healthcare transitions for adolescents with chronic life-threatening conditions using a Delphi method to identify research priorities for clinicians and academics in Canada. Child Care Health and Development 37, 875–882.
23. Fredericks E.M., Dore-Stites D., Well A. et al. (2010) Assessment of transition readiness skills and adherence in pediatric liver transplant recipients. Pediatric Transplantation 14, 944–953.
24. Freyer D.R. & Brugieres L. (2008) Adolescent and young adult oncology: transition of care. Pediatric Blood & Cancer 50, 1116–1119.
25. Goldenring J.M. & Rosen D.S. (2004) Getting into adolescent heads: an essential update. Contemporary Pediatrics 21, 64–90.
26. Hait E., Arnold J.H. & Fishman L.N. (2006) Educate, communicate, anticipate – practical recommendations for transitioning adolescents with IBD to adult health care. Inflammatory Bowel Diseases 12, 70–73.
27. Harden P.N., Walsh G., Bandler N. et al. (2012) Bridging the gap: an integrated paediatric to adult clinical service for young adults with kidney failure. British Medical Journal 344, e3718.
28. Hommel K.A., Odell S., Sander E., Baldassano R.N. & Barg F.K. (2011) Treatment adherence in paediatric inflammatory bowel disease: perceptions from adolescent patients and their families. Health & Social Care in the Community 19, 80–88.
29. Huang J.S., Gottschalk M., Pian M., Dillon L., Barajas D. & Bartholomew L.K. (2011) Transition to adult care: systematic assessment of adolescents with chronic illnesses and their medical teams. Journal of Pediatrics 159, 994–998.
30. Iles N. & Lowton K. (2010) What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services? Health & Social Care in the Community 18, 21–29.
31. Jacquez F., Vaughn L.M. & Wagner E. (2013) Youth as partners, participants or passive recipients: a review of children and adolescents in community-based participatory research (CBPR). American Journal of Community Psychology 51, 176–189.
32. Kennedy A., Sloman F., Douglass J.A. & Sawyer S.M. (2007) Young people with chronic illness: the approach to transition. Internal Medicine Journal 37, 555–560.
33. Kime N., McKenna J. & Webster L. (2013) Young people's participation in the development of a self-care intervention – a multi-site formative research study. Health Education Research 28, 552–562.
34. Kingsnorth S., Gall C., Beayni S. & Rigby P. (2011) Parents as transition experts? Qualitative findings from a pilot parent-led peer support group. Child: Care, Health and Development 37, 833–840.
35. Korus M., Cruchley E., Stinson J.N., Gold A. & Anthony S.J. (2015) Usability testing of the Internet program: “Teens Taking Charge: Managing My Transplant Online”. Pediatric Transplantation 19, 107–117.
36. Logan D.E., Simons L.E. & Kaczynski K.J. (2009) School functioning in adolescents with chronic pain: the role of depressive symptoms in school impairment. Journal of Pediatric Psychology 34, 882–892.
37. Lugasi T., Achille M. & Stevenson M. (2011) Patients’ perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory integrated metasummary of quantitative and qualitative studies. Journal of Adolescent Health 48, 429–440.
38. Maslow G.R., Haydon A., McRee A.L., Ford C.A. & Halpern C.T. (2011) Growing up with a chronic illness: social success, educational/vocational distress. Journal of Adolescent Health 49, 206–212.
39. Maslow G., Adams C., Willis M. et al. (2013) An evaluation of a positive youth development program for adolescents with chronic illness. Journal of Adolescent Health 52, 179–185.
40. Mayring P. (2010) Qualitative Inhaltsanalyse: Grundlagen und Techniken [Qualitative Content Analysis – Theoretical Foundation and Basic Procedures]. Beltz, Weinheim.
41. McDonagh J.E. & Bateman B. (2012) ‘Nothing about us without us’: considerations for research involving young people. Archives of Disease in Childhood, Education and Practice Edition 97, 55–60.
42. Olsson C.A., Boyce M.F., Toumbourou J.W. & Sawyer S.M. (2005) The role of peer support in facilitating psychosocial adjustment to chronic illness in adolescence. Clinical Child Psychology and Psychiatry 10, 78–87.
43. Pacaud D., Yale J.-F., Stephure D., Trussell R. & Davies D. (2005) Problems in transition from pediatric care to adult care for individuals with diabetes. Canadian Journal of Diabetes 29, 13–18.
44. Peeters M.A.C., Hilberink S.R. & van Staa A. (2014) The road to independence: lived experiences of youth with chronic conditions and their parents compared. Journal of Pediatric Rehabilitation Medicine 7, 33–42.
45. Price C.S., Corbett S., Lewis-Barned N., Morgan J., Oliver L.E. & Dovey-Pearce G. (2011) Implementing a transition pathway in diabetes: a qualitative study of the experiences and suggestions of young people with diabetes. Child: Care, Health and Development 37, 852–860.
46. Rosen D.S., Blum R.W., Britto M., Sawyer S.M. & Siegel D.M. (2003) Transition to adult health care for adolescents and young adults with chronic conditions – position paper of the Society for Adolescent Medicine. Journal of Adolescent Health 33, 309–311.
47. Rosen-Reynoso M., Kusminsky M., Gragoudas S. et al. (2010) Youth-based participatory research: lessons learned from a transition research study. Pediatrics 126, S177–S182.
48. Sattoe J.N.T., Jedeloo S. & van Staa A. (2013) Effective peer-to-peer support for young people with end-stage renal disease: a mixed methods evaluation of Camp COOL. BMC Nephrology 14, 279.
49. Sattoe J.N.T., Hilberink S.R., Peeters M.A.C. & van Staa A. (2014) ‘Skills for growing up’: supporting autonomy in young people with kidney disease. Journal of Renal Care 40, 131–139.
50. Sawyer S.M., Drew S., Yeo M.S. & Britto M.T. (2007) Adolescents with a chronic condition: challenges living, challenges treating. Lancet 369, 1481–1489.
51. Schalm S. & Jansson A.F. (2012) Transition in die Erwachsenenrheumatologie [Transitional care in rheumatology in Germany]. Internist 53, 1054–1062.
52. Schmidt S., Herrmann-Garitz C., Bomba F. & Thyen U. (2016) A multicenter prospective quasi-experimental study on the impact of a transition-oriented generic patient education program on health service participation and quality of life in adolescents and young adults. Patient Education and Counseling 99, 421–428.
53. Schwarz M. (2012) Transition bei angeborenen Stoffwechselkrankheiten. Von der Jugendmedizin zur Versorgung des Erwachsenen [Transition for patients with inborn errors of metabolism. From adolescent to adult care]. Monatsschrift Kinderheilkunde 160, 750–755.
54. Serlachius A., Northam E., Frydenberg E. & Cameron F. (2012) Adapting a generic coping skills programme for adolescents with type 1 diabetes: a qualitative study. Journal of Health Psychology 17, 313–323.
55. Shaw K.L., Southwood T.R. & McDonagh J.E. (2004) Transitional care for adolescents with juvenile idiopathic arthritis: a Delphi study. Rheumatology 43, 1000–1006.
56. Singh S.P., Paul M., Ford T. et al. (2010) Process, outcome and experience of transition from child to adult mental healthcare: multiperspective study. British Journal of Psychiatry 197, 305–312.
57. Soanes C. & Timmons S. (2004) Improving transition: a qualitative study examining the attitudes of young people with chronic illness transferring to adult care. Journal of Child Health Care 8, 102–112.
58. van Staa A. & Sattoe J.N.T. (2014) Young adults’ experiences and satisfaction with the transfer of care. Journal of Adolescent Health 55, 796–803.
59. van Staa A., Jedeloo S., van der Stege H. & On Your Own Feet Research Group (2011a) “What we want”: chronically ill adolescents’ preferences and priorities for improving health care. Patient Preference and Adherence 5, 291–305.
60. van Staa A., van der Stege H.A., Jedeloo S., Moll H.A. & Hilberink S.R. (2011b) Readiness to transfer to adult care of adolescents with chronic conditions: exploration of associated factors. Journal of Adolescent Health 48, 295–302.
61. van Staa A.L., Jedeloo S., van Meeteren J. & Latour J.M. (2011c) Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers. Child: Care, Health and Development 37, 821–832.
62. Tong A., Wong G., Hodson E., Walker R.G., Tjaden L. & Craig J.C. (2013) Adolescent views on transition in diabetes and nephrology. European Journal of Pediatrics 172, 293–304.
63. Wells C.K., McMorris B.J., Horvath K.J., Garwick A.W. & Scal P.B. (2012) Youth report of healthcare transition counseling and autonomy support from their rheumatologist. Pediatric Rheumatology 10, 1–6.
64. Zimmerman M.A. (1995) Psychological empowerment: issues and illustrations. American Journal of Community Psychology 23, 581–599.