The road to independence: Lived experiences of youth with chronic conditions and their parents compared

Journal of Pediatric Rehabilitation Medicine

Volumn 7, Issue 1, 2014, Pages 33-42

  Peeters, Mariëlle A C ^a   Hilberink, Sander R ^a   Van Staa, Anneloes ^a,b  

^a ROTTERDAM UNIVERSITY OF APPLIED SCIENCES   (Netherlands)

^b ERASMUS UNIVERSITY ROTTERDAM   (Netherlands)

Author keywords

chronic conditions; lived experiences; parents; transition; Young persons

Indexed keywords

ADOLESCENT; ADULT; ADULTHOOD; ANNOYANCE; ARTICLE; CHILD DEVELOPMENT; CHRONIC DISEASE; CLINICAL ARTICLE; CONGENITAL HEART DISEASE; CONTROLLED STUDY; CYSTIC FIBROSIS; DAILY LIFE ACTIVITY; DIABETES MELLITUS; EDUCATION; FEMALE; HEALTH CARE; HEMOPHILIA; HUMAN; INDEPENDENT LIVING; INTIMACY; JUVENILE RHEUMATOID ARTHRITIS; LEISURE; MALE; PARENTAL ATTITUDE; PATIENT ATTITUDE; PERSONAL EXPERIENCE; PRIORITY JOURNAL; SELF CARE; SELF CONCEPT; SELF RELIANCE; SEMI STRUCTURED INTERVIEW; SICKLE CELL ANEMIA; SOCIAL INTERACTION; SOCIAL PARTICIPATION; SPINAL DYSRAPHISM; THEMATIC ANALYSIS; TRAFFIC AND TRANSPORT; WORK; CHILD PSYCHOLOGY; PARENT; PSYCHOLOGY; QUALITATIVE RESEARCH; YOUNG ADULT;

ADOLESCENT; CHRONIC DISEASE; FEMALE; HUMANS; MALE; PARENTS; PSYCHOLOGY, ADOLESCENT; QUALITATIVE RESEARCH; YOUNG ADULT;

EID: 84902346121     PISSN: 18745393     EISSN: 18758894     Source Type: Journal    
DOI: 10.3233/PRM-140272     Document Type: Article

References (41)

1. K.B. Blomquist, G. Brown, A. Peersen and E.P. Presler, Transitioning to independence: challenges for young people with disabilities and their caregivers, Orthop Nurs 17(3) (1998), 27-35.
2. S. Kirk, Transitions in the lives of young people with complex healthcare needs, Child Care Health Dev 34(5) (2008), 567-75.
3. M. Donkervoort, D.J.H.G. Wiegerink, J. Meeteren van, H.J. Stam and M.E. Roebroeck, Transition to adulthood: validation of the Rotterdam Transition Profile for young adults with cerebral palsy and normal intelligence, Dev Med Child Neurol 51(1) (2009), 53-62.
4. L. Haverman, E.J. Verhoof, H. Maurice-Stam, H.S. Heymans, D.M. Gerlag, M.A. van Rossum et al., Health-related quality of life and psychosocial developmental trajectory in young female beneficiaries with JIA, Rheumatology (Oxford) 51(2) (2012), 368-374.
5. W. Martinez, J.S. Carter and L.J. Legato, Social competence in children with chronic illness: A meta-analytic review, J Pediatr Psychol 36(8) (2011), 878-890.
6. H. Maurice-Stam, E.E. Hartman, J.A. Deurloo, J. Groothoff and M.A. Grootenhuis, Young adult patients with a history of pediatric disease: Impact on course of life and transition into adulthood, J Adolesc Health 39(1) (2006), 4-13. (Pubitemid 43867332)
7. J.N.T. Sattoe, S.R. Hilberink, M.A.C. Peeters and A.L. van Staa, 'Skills for Growing Up': supporting autonomy in young people with renal disease, Journal of Renal Care, 2013, In press.
8. H.A. Barf, M. Verhoef, M.W. Post, A. Jennekens-Schinkel, R.H. Gooskens, R.A. Mullaart et al., Educational career and predictors of type of education in young adults with spina bifida, Int J Rehabil Res 27(1) (2004), 45-52. (Pubitemid 38393500)
9. I. Plug, M. Peters, E.P. Mauser-Bunschoten, A. de Goede- Bolder, L. Heijnen, C. Smit et al., Social participation of patients with hemophilia in the Netherlands, Blood 111(4) (2008), 1811-1815. (Pubitemid 351451486)
10. M. Verhoef, H.A. Barf, J.A. Vroege, M.W. Post, F.W. van Asbeck, R.H. Gooskens et al., Sex education, relationships, and sexuality in young adults with spina bifida, Arch Phys Med Rehabil 86(5) (2005), 979-987. (Pubitemid 40692366)
11. E. Verhoof, H. Maurice-Stam, H. Heymans and M. Grootenhuis, Growing into disability benefits? Psychosocial course of life of young adults with a chronic somatic disease or disability, Acta Paediatr 101(1) (2012), e19-26.
12. D.J. Wiegerink, M.E. Roebroeck, M. Donkervoort, P.T. Cohen-Kettenis and H.J. Stam, Social, intimate and sexual relationships of adolescents with cerebral palsy compared with able-bodied age-mates, J Rehabil Med 40(2) (2008), 112-118. (Pubitemid 351403996)
13. P.W. Newacheck, M.A. McManus and H.B. Fox, Prevalence and impact of chronic illness among adolescents, Am J Dis Child 145(12) (1991), 1367-1373.
14. G. Sinnema, Youths with chronic illness and disability on their way to social and economic participation: A health-care perspective, J Adolesc Health 13(5) (1992), 369-371.
15. A.L. van Staa, H.A. van der Stege, S. Jedeloo, H.A. Moll and S. Hilberink, Readiness to transfer to adult care of adolescents with chronic conditions: exploration of associated factors, J Adolesc Health 48(3) (2011), 295-302.
16. M.E. Roebroeck, R. Jahnsen, C. Carona, R.M. Kent and M.A. Chamberlain, Adult outcomes and lifespan issues for people with childhood-onset physical disability, Dev Med Child Neurol 51(8) (2009), 670-678.
17. M.G. Sawyer, K.E. Reynolds, J.J. Couper, D.J. French, D. Kennedy, J. Martin et al., A two-year prospective study of the health-related quality of life of children with chronic illnessthe parents' perspective, Qual Life Res 14(2) (2005), 395-405. (Pubitemid 40576389)
18. R.M. Viner, Transition of care from paediatric to adult services: One part of improved health services for adolescents, Arch Dis Child 93(2) (2008), 160-163. (Pubitemid 351204760)
19. G.N. Holmbeck, S.Z. Johnson, K.E. Wills, W. McKernon, B. Rose, S. Erklin et al., Observed and perceived parental overprotection in relation to psychosocial adjustment in preadolescents with a physical disability: The mediational role of behavioral autonomy, J Consult Clin Psychol 70(1) (2002), 96-110. (Pubitemid 34150977)
20. C. Eiser and J.L. Berrenberg, Assessing the impact of chronic disease on the relationship between parents and their adolescents, J Psychosom Res 39(2) (1995), 109-114.
21. A.L. van Staa, On Your Own Feet Research Group. Unraveling triadic communication in hospital consultations with adolescents with chronic conditions: The added value of mixed methods research, Patient Educ Couns 82(3) (2011), 455-464.
22. I.P. Vermaes, J.R. Gerris and J.M. Janssens, Parents' social adjustment in families of children with spina bifida: A theorydriven review, J Pediatr Psychol 32(10) (2007), 1214-1226.
23. D. Oeffinger, G. Gorton, A. Bagley, D. Nicholson, D. Barnes, J. Calmes et al., Outcome assessments in children with cerebral palsy, part I: descriptive characteristics of GMFCS Levels I to III, Dev Med Child Neurol 49(3) (2007), 172-180. (Pubitemid 46729879)
24. V.A. Miller, Parent-child collaborative decision making for the management of chronic illness: A qualitative analysis, Fam Syst Health 27(3) (2009), 249-266.
25. B. Beresford, On the road to nowhere? Young disabled people and transition, Child Care Health Dev 30(6) (2004), 581-587. (Pubitemid 39562447)
26. J.C. Surís, P.A. Michaud and R. Viner, The adolescent with a chronic condition. Part I: developmental issues, Arch Dis Child 89(10) (2004), 938-942.
27. A.L. van Staa, S. Jedeloo, J. van Meeteren and J.M. Latour, Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers, Child Care Health Dev 37(6) (2011), 821-832.
28. W.L. Neuman, Social Research Methods: Qualitative and Quantitative Approaches. 7th ed. Boston: Allyn and Bacon, 2011.
29. K.F. Hyde, Recognising deductive processes in qualitative research, Qualitative Market Research: An International Journal 3(2) (2000), 82-89.
30. M.B. Miles and A.M. Huberman, Qualitative data analysis: An expanded sourcebook. 2nd ed. London: Sage Publications, 1994.
31. C.G.B. Maathuis, I. Vos, M.E. Roebroeck and S.R. Hilberink, Een instrument om vaardigheden voor zelfstandigheid te vergroten: De Groei-wijzer [A tool to increase skills for independence: The Skills for Growing Up], Nederlands Tijdschrift voor Revalidatiegeneeskunde 34(3) (2012), 115-119.
32. L.K. Brunton and D.J. Bartlett, The bodily experience of cerebral palsy: A journey to self-awareness, Disabil Rehabil (2013), 1-10.
33. J.N.T. Sattoe, A.L. van Staa and H.A. Moll, On Your Own Feet Research Group. The proxy problem anatomized: childparent disagreement in health related quality of life reports of chronically ill adolescents, Health Qual Life Outcomes 10 (2012), 10.
34. H. Maurice-Stam, E.J. Verhoof, H.N. Caron and M.A. Grootenhuis, Are survivors of childhood cancer with an unfavourable psychosocial developmental trajectory more likely to apply for disability benefits? Psycho-Oncology 22(3) (2013), 708-714.
35. S. Kingsnorth, H. Healy and C. Macarthur, Preparing for adulthood: A systematic review of life skill programs for youth with physical disabilities, J Adolesc Health 41(4) (2007), 323-332. (Pubitemid 47398965)
36. G.M. Kieckhefer and C.M. Trahms, Supporting development of children with chronic conditions: from compliance toward shared management, Pediatr Nurs 26(4) (2000), 354-363.
37. G. Maslow, C. Adams, M. Willis, J. Neukirch, K. Herts, W. Froehlich et al., An evaluation of a positive youth development program for adolescents with chronic illness, J Adolesc Health 52(2) (2013), 179-185.
38. C. Gall, S. Kingsnorth and H. Healy, Growing up ready: A shared mangement approach, Phys Occup Ther Pediatr 26(4) (2006), 47:62.
39. G.M. Kieckhefer, A shared management approach to transition. Paper presented at the Hospital for Sick Children, Toronto, ON.
40. G.N. Holmbeck, V.C. Westhoven, W.S. Phillips, R. Bowers, C. Gruse, T. Nikolopoulos et al., A multimethod, multiinformant, and multidimensional perspective on psychosocial adjustment in preadolescents with spina bifida, J Consult Clin Psychol 71(4) (2003), 782-796. (Pubitemid 36897412)
41. J.M. Goldenring and D.S. Rosen, Getting into adolescent heads: An essential update, Contemporary Pediatrics 21(1) (2004), 64-90.