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Self-Management of Young People with Chronic Conditions: An Overview and Introduction

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Self-Management of Young People with Chronic Conditions

Abstract

This chapter introduces the core concepts of this volume, entitled Self-Management of Young People with Chronic Conditions. A Strength-Based Approach for Empowerment and Support. We critically discuss definitions related to self-management and empowerment of young people with chronic conditions, such as: chronic disease, healthcare transition, self-management (support), empowerment, autonomy, and agency. Furthermore, the core principles that guide this book are introduced: we advocate a positive youth development approach, focusing on empowerment and growth rather than problems or issues; and employ a broad definition of self-management, which means that it goes beyond medical management and focuses on young people achieving their full potential and a good quality of life. This chapter ends with a brief overview of the contents of the chapters included in this book.

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References

  1. Sawyer SM, Drew S, Yeo MS, Britto MT. Adolescents with a chronic condition: challenges living, challenges treating. Lancet. 2007;369(9571):1481–9. https://doi.org/10.1016/S0140-6736(07)60370-5.

    Article  PubMed  Google Scholar 

  2. Stein RE, Bauman LJ, Westbrook LE, Coupey SM, Ireys HT. Framework for identifying children who have chronic conditions: the case for a new definition. J Pediatr. 1993;122(3):342–7. https://doi.org/10.1016/S0022-3476(05)83414-6.

    Article  CAS  PubMed  Google Scholar 

  3. McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck PW, et al. A new definition of children with special health care needs. Pediatrics. 1998;102(1):137–9. https://doi.org/10.1542/peds.102.1.137.

    Article  CAS  PubMed  Google Scholar 

  4. Health Resources and Service Administration. Children with special health care needs. 2019. https://mchb.hrsa.gov//maternal-child-health-topics/children-and-youth-special-health-needs.

  5. van Hal L, Tierolf B, van Rooijen M, van der Hoff M. Een actueel perspectief op kinderen en jongeren met een chronische aandoening in Nederland: omvang, samenstelling en participatie. [A recent perspective on children and youth with a chronic condition in the Netherlands: scope, composition and participation]. Utrecht: Verwey-Jonker Instituut; 2019.

    Google Scholar 

  6. Gorter J, Stewart D, Woodbury-Smith M. Youth in transition: care, health and development. Child Care Health Dev. 2011;37(6):757–63. https://doi.org/10.1111/j.1365-2214.2011.01336.x.

    Article  CAS  PubMed  Google Scholar 

  7. Modi AC, Pai AL, Hommel KA, Hood KK, Cortina S, Hilliard ME, et al. Pediatric self-management: a framework for research, practice, and policy. Pediatrics. 2012;129(2):e473–85. https://doi.org/10.1542/peds.2011-1635.

  8. Miller WR, Lasiter S, Ellis RB, Buelow JM. Chronic disease self-management: a hybrid concept analysis. Nurs Outlook. 2015;63(2):154–61. https://doi.org/10.1016/j.outlook.2014.07.005.

    Article  PubMed  Google Scholar 

  9. Nguyen T, Henderson D, Stewart D, Hlyva O, Punthakee Z, Gorter J. You never transition alone! Exploring the experiences of youth with chronic health conditions, parents and healthcare providers on self-management. Child Care Health Dev. 2016;42(4):464–72. https://doi.org/10.1111/cch.12334.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  10. Sattoe JNT. Growing up with a chronic condition: challenges for self-management and self-management support. Rotterdam: Erasmus University Rotterdam; 2015.

    Google Scholar 

  11. Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, Slap GB. Transition from child-centered to adult health-care systems for adolescents with chronic conditions: a position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993;14(7):570–6. https://doi.org/10.1016/1054-139X(93)90143-D.

    Article  CAS  PubMed  Google Scholar 

  12. Betz CL, Coyne IT. Transition from pediatric to adult healthcare services for adolescents and young adults with long-term conditions: an international perspective on nurses’ roles and interventions. Cham: Springer; 2019. https://doi.org/10.1007/978-3-030-23384-6.

    Book  Google Scholar 

  13. McDonagh JE, Farre A. Are we there yet? An update on transitional care in rheumatology. Arthritis Res Ther. 2018;20(1):1–3. https://doi.org/10.1186/s13075-017-1502-y.

    Article  Google Scholar 

  14. van Staa AL, Peeters MAC, Sattoe JNT. On your own feet: a practical framework for improving transitional care and young people’s self-management. In: Betz CL, Coyne I, editors. Transition from pediatric to adult healthcare services for young adults with long-term conditions. An international perspective on nurses’ roles and interventions, Chapter 9. Cham: Springer International; 2020. p. 191–228. https://doi.org/10.1007/978-3-030-23384-6_9.

    Chapter  Google Scholar 

  15. Hergenroeder AC, Wiemann CM. Health care transition: building a program for adolescents and young adults with chronic illness and disability. Cham: Springer; 2018. https://doi.org/10.1007/978-3-319-72868-1.

    Book  Google Scholar 

  16. Wood D, Williams A, Koyle MA, Baird AD. Transitioning medical care: through adolescence to adulthood. Cham: Springer; 2019. https://doi.org/10.1007/978-3-030-05895-1.

    Book  Google Scholar 

  17. Got Transition. The six core elements of health care. Transition. 2014;(2.0). http://www.gottransition.org.

  18. Mazur A, Dembinski L, Schrier L, Hadjipanayis A, Michaud PA. European Academy of Paediatric consensus statement on successful transition from paediatric to adult care for adolescents with chronic conditions. Acta Paediatr. 2017;106(8):1354–7. https://doi.org/10.1111/apa.13901.

    Article  PubMed  Google Scholar 

  19. National Institute for Health Care Excellence. NICE guidelines [NG43] Transition from children’s to adults’ services for young people using health or social care services. 2016.

    Google Scholar 

  20. Surís J-C, Akré C. Key elements for, and indicators of, a successful transition: an international Delphi study. J Adolesc Health. 2015;56(6):612–8. https://doi.org/10.1016/j.jadohealth.2015.02.007.

    Article  PubMed  Google Scholar 

  21. Betz CL, Lobo ML, Nehring WM, Bui K. Voices not heard: a systematic review of adolescents’ and emerging adults’ perspectives of health care transition. Nurs Outlook. 2013;61(5):311–36. https://doi.org/10.1016/j.outlook.2013.01.008.

    Article  PubMed  Google Scholar 

  22. Fegran L, Hall EO, Uhrenfeldt L, Aagaard H, Ludvigsen MS. Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: a qualitative metasynthesis. Int J Nurs Stud. 2014;51(1):123–35. https://doi.org/10.1016/j.ijnurstu.2013.02.001.

    Article  PubMed  Google Scholar 

  23. Heath G, Farre A, Shaw K. Parenting a child with chronic illness as they transition into adulthood: a systematic review and thematic synthesis of parents’ experiences. Patient Educ Couns. 2017;100(1):76–92. https://doi.org/10.1016/j.pec.2016.08.011.

    Article  PubMed  Google Scholar 

  24. Nehring WM, Betz CL, Lobo ML. Uncharted territory: systematic review of providers’ roles, understanding, and views pertaining to health care transition. J Pediatr Nurs. 2015;30(5):732–47. https://doi.org/10.1016/j.pedn.2015.05.030.

  25. van den Brink G, van Gaalen MA, de Ridder L, van der Woude CJ, Escher JC. Health care transition outcomes in inflammatory bowel disease: a multinational Delphi study. J Crohn Col. 2019;13(9):1163–72. https://doi.org/10.1093/ecco-jcc/jjz044.

    Article  Google Scholar 

  26. Campbell F, Biggs K, Aldiss SK, O’Neill PM, Clowes M, McDonagh J, et al. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database Syst Rev. 2016;29(4):CD009794. https://doi.org/10.1002/14651858.CD009794.pub2.

    Article  Google Scholar 

  27. Hart LC, Patel-Nguyen SV, Merkley MG, Jonas DE. An evidence map for interventions addressing transition from pediatric to adult care: a systematic review of systematic reviews. J Pediatr Nurs. 2019;48:18–34. https://doi.org/10.1016/j.pedn.2019.05.015.

    Article  PubMed  Google Scholar 

  28. Schultz AT, Smaldone A. Components of interventions that improve transitions to adult care for adolescents with type 1 diabetes. J Adolesc Health. 2017;60(2):133–46. https://doi.org/10.1016/j.jadohealth.2016.10.002.

    Article  Google Scholar 

  29. Corbin JM, Strauss A. Unending work and care: managing chronic illness at home. San Fransisco, CA: Jossey-Bass; 1988.

    Google Scholar 

  30. Lorig KR, Holman HR. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26(1):1–7. https://doi.org/10.1207/S15324796ABM2601_01.

    Article  PubMed  Google Scholar 

  31. Packer TL, Fracini A, Audulv Å, Alizadeh N, van Gaal BG, Warner G, Kephart G. What we know about the purpose, theoretical foundation, scope and dimensionality of existing self-management measurement tools: a scoping review. Patient Educ Couns. 2018;101(4):579–95. https://doi.org/10.1016/j.pec.2017.10.014.

    Article  PubMed  Google Scholar 

  32. Sattoe JNT, Bal MI, Roelofs PD, Bal R, Miedema HS, van Staa A. Self-management interventions for young people with chronic conditions: a systematic overview. Patient Educ Couns. 2015;98(6):704–15. https://doi.org/10.1016/j.pec.2015.03.004.

  33. Van de Velde D, De Zutter F, Satink T, Costa U, Janquart S, Senn D, De Vriendt P. Delineating the concept of self-management in chronic conditions: a concept analysis. BMJ Open. 2019;9(7):e027775. https://doi.org/10.1136/bmjopen-2018-027775.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Grypdonck M. Zelfmanagement. [Self-management]. In: van den Brink R, Timmermans H, van Havers J, Veenendaal H, editors. Ruimte voor regie. Pioniers over zelfmanagement in de zorg. [Making room for taking control. Pioneers on self-management in healthcare]. Deventer/Utrecht: Kluwer/CBO; 2013.

    Google Scholar 

  35. Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns. 2002;48(2):177–87. https://doi.org/10.1016/s0738-3991(02)00032-0.

    Article  PubMed  Google Scholar 

  36. Jones MC, MacGillivray S, Kroll T, Zohoor AR, Connaghan J. A thematic analysis of the conceptualisation of self-care, self-management and self-management support in the long-term conditions management literature. J Nurs Healthc Chronic Illn. 2011;3(3):174–85. https://doi.org/10.1111/j.1752-9824.2011.01096.x.

    Article  Google Scholar 

  37. Jonsdottir H. Self-management programmes for people living with chronic obstructive pulmonary disease: a call for a reconceptualisation. J Clin Nurs. 2013;22(5–6):621–37. https://doi.org/10.1111/jocn.12100.

    Article  PubMed  Google Scholar 

  38. Koch T, Jenkin P, Kralik D. Chronic illness self-management: locating the ‘self’. J Adv Nurs. 2004;48(5):484–92. https://doi.org/10.1111/j.1365-2648.2004.03237.x.

    Article  PubMed  Google Scholar 

  39. Schulman-Green D, Jaser S, Martin F, Alonzo A, Grey M, McCorkle R, et al. Processes of self-management in chronic illness. J Nurs Scholarsh. 2012;44(2):136–44. https://doi.org/10.1111/j.1547-5069.2012.01444.x.

    Article  PubMed  PubMed Central  Google Scholar 

  40. Udlis KA. Self-management in chronic illness: concept and dimensional analysis. J Nurs Healthc Chronic Illn. 2011;3(2):130–9. https://doi.org/10.1111/j.1752-9824.2011.01085.x.

    Article  Google Scholar 

  41. Bourbeau J. Disease-specific self-management programs in patients with advanced chronic obstructive pulmonary disease. Dis Manag Health Out. 2003;11(5):311–9. https://doi.org/10.2165/00115677-200311050-00004.

    Article  Google Scholar 

  42. Coleman MT, Newton KS. Supporting self-management in patients with chronic illness. Am Fam Physician. 2005;72(8):1503–10.

    PubMed  Google Scholar 

  43. Nightingale R, McHugh G, Kirk S, Swallow V. Supporting children and young people to assume responsibility from their parents for the self-management of their long-term condition: an integrative review. Child Care Health Dev. 2019;45(2):175–88. https://doi.org/10.1111/cch.12645.

    Article  PubMed  Google Scholar 

  44. Strauss AL, Glaser BG. Chronic illness and the quality of life. St. Louis, MO: Mosby; 1975.

    Google Scholar 

  45. Audulv Å, Norbergh KG, Asplund K, Hörnsten Å. An ongoing process of inner negotiation–a Grounded Theory study of self-management among people living with chronic illness. J Nurs Healthc Chronic Illn. 2009;1(4):283–93. https://doi.org/10.1111/j.1752-9824.2009.01039.x.

    Article  Google Scholar 

  46. Paterson BL. The shifting perspectives model of chronic illness. J Nurs Scholarsh. 2001;33(1):21–6. https://doi.org/10.1111/j.1547-5069.2001.00021.x.

    Article  CAS  PubMed  Google Scholar 

  47. Audulv Ã…. The over time development of chronic illness self-management patterns: a longitudinal qualitative study. BMC Public Health. 2013;13(1):452. https://doi.org/10.1186/1471-2458-13-452.

    Article  PubMed  PubMed Central  Google Scholar 

  48. van Hooft SM, Dwarswaard J, Jedeloo S, Bal R, van Staa A. Four perspectives on self-management support by nurses for people with chronic conditions: a Q-methodological study. Int J Nurs Stud. 2015;52(1):157–66. https://doi.org/10.1016/j.ijnurstu.2014.07.004.

    Article  PubMed  Google Scholar 

  49. Dwarswaard J, Bakker EJ, van Staa A, Boeije HR. Self-management support from the perspective of patients with a chronic condition: a thematic synthesis of qualitative studies. Health Expect. 2016;19(2):194–208. https://doi.org/10.1111/hex.12346.

    Article  PubMed  Google Scholar 

  50. Richard AA, Shea K. Delineation of self-care and associated concepts. J Nurs Scholarsh. 2011;43(3):255–64. https://doi.org/10.1111/j.1547-5069.2011.01404.x.

    Article  PubMed  Google Scholar 

  51. Callery P, Coyne I. Supporting children and adolescents inclusion in decisions and self-management: what can help? Patient Educ Couns. 2019;102(4):605–6. https://doi.org/10.1016/j.pec.2019.03.003.

    Article  PubMed  Google Scholar 

  52. Kirk S. Transitions in the lives of young people with complex healthcare needs. Child Care Health Dev. 2008;34(5):567–75. https://doi.org/10.1111/j.1365-2214.2008.00862.x.

    Article  CAS  PubMed  Google Scholar 

  53. Lozano P, Houtrow A. Supporting self-management in children and adolescents with complex chronic conditions. Pediatrics. 2018;141(Suppl 3):S233–41. https://doi.org/10.1542/peds.2017-1284H.

    Article  PubMed  Google Scholar 

  54. Sawyer SM, Aroni RA. Self-management in adolescents with chronic illness. What does it mean and how can it be achieved? Med J Aust. 2005;183(8):405–9. https://doi.org/10.5694/j.1326-5377.2005.tb07103.x.

    Article  PubMed  Google Scholar 

  55. Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. JAMA. 2002;288(19):2469–75.

    Article  Google Scholar 

  56. Glasgow RE, Davis CL, Funnell MM, Beck A. Implementing practical interventions to support chronic illness self-management. Jt Comm J Qual Saf. 2003;29(11):563–74.

    PubMed  Google Scholar 

  57. Whitlock EP, Orleans CT, Pender N, Allan J. Evaluating primary care behavioral counseling interventions: an evidence-based approach. Am J Prev Med. 2002;22(4):267–84.

    Article  Google Scholar 

  58. Whitehead D. Health promotion and health education viewed as symbiotic paradigms: bridging the theory and practice gap between them. J Clin Nurs. 2003;12(6):796–805.

    Google Scholar 

  59. Gibson CH. A concept analysis of empowerment. J Adv Nurs. 1991;16(3):354–61. https://doi.org/10.1111/j.1365-2648.1991.tb01660.x.

    Article  CAS  PubMed  Google Scholar 

  60. Small N, Bower P, Chew-Graham CA, Whalley D, Protheroe J. Patient empowerment in long-term conditions: development and preliminary testing of a new measure. BMC Health Serv Res. 2013;13(1):263. https://doi.org/10.1186/1472-6963-13-263.

    Article  PubMed  PubMed Central  Google Scholar 

  61. Mora MA, Sparud-Lundin C, Bratt E-L, Moons P. Empowering young persons during the transition to adulthood. In: Betz C, Coyne I, editors. Transition from pediatric to adult healthcare services for adolescents and young adults with long-term conditions. Cham: Springer; 2020. p. 19–46. https://doi.org/10.1007/978-3-030-23384-6_2.

    Chapter  Google Scholar 

  62. Úcar Martínez X, Jiménez-Morales M, Soler Masó P, Trilla Bernet J. Exploring the conceptualization and research of empowerment in the field of youth. Int J Adolesc Youth. 2017;22(4):405–18. https://doi.org/10.1080/02673843.2016.1209120.

    Article  Google Scholar 

  63. DeLoach C, Wilkins RD, Walker GW. Independent living: philosophy, process, and services. Baltimore, MD: University Park Press; 1983.

    Google Scholar 

  64. Hilberink SR, Cardol M. Agency in the twenty-first century: the emperor’s new clothes. Disabil Soc. 2013;28(4):569–74. https://doi.org/10.1080/09687599.2013.790616.

    Article  Google Scholar 

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Authors and Affiliations

  1. Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands

    AnneLoes van Staa, Sander R. Hilberink & Jane N. T. Sattoe

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  1. AnneLoes van Staa
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  2. Sander R. Hilberink
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  3. Jane N. T. Sattoe
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Correspondence to AnneLoes van Staa .

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Editors and Affiliations

  1. Research Centre Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands

    Jane N. T. Sattoe

  2. Research Centre Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands

    AnneLoes van Staa

  3. Research Centre Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands

    Sander R. Hilberink

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van Staa, A., Hilberink, S.R., Sattoe, J.N.T. (2021). Self-Management of Young People with Chronic Conditions: An Overview and Introduction. In: Sattoe, J.N.T., van Staa, A., Hilberink, S.R. (eds) Self-Management of Young People with Chronic Conditions. Springer, Cham. https://doi.org/10.1007/978-3-030-64293-8_1

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  • DOI: https://doi.org/10.1007/978-3-030-64293-8_1

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