Skip to main content

Psychosoziale Entwicklung und Betreuung des CF-Kranken

  • Chapter
  • 149 Accesses

Zusammenfassung

Die Geburt eines Kindes — vor allem des ersten — ändert sehr viel im Leben von Erwachsenen. (Ehe-) Partner sollen sich zu Eltern und Erziehern entwickeln, Wohnraum, Zeit, Energie und Finanzen müssen auf einen weiteren Menschen ausgerichtet werden, der bisherige Aktionsradius erfährt eine Einschränkung. Auf einige Veränderungen sind die Eltern vorbereitet, so manche nötige Umstellungen lernen sie aber erst durch das Zusammenleben mit dem Kind. In diese Umstellungsphase hinein kommt nun ein weiteres, das Leben der Eltern in allen Bereichen vollkommen veränderndes Ereignis dazu: bei ihrem Kind wird die Krankheit cystische Fibrose festgestellt. Eine Krankheit, die man zwar von Beginn an behandeln kann, die aber trotzdem bestehen bleiben wird. Viele Kinder und Eltern trifft die Diagnose CF völlig unerwartet. Je jünger das Kind, desto weniger denken medizinische Laien an die Möglichkeit des Auftretens einer chronischen, manchmal bis dahin völlig unbekannten, Krankheit. Da gegenwärtig der Groβteil der von CF Betroffenen im Säuglings- bzw. Kleinkindalter diagnostiziert wird, konzentriert sich dieser Abschnitt auf die Auswirkungen auf die Eltern und die Arbeit imit ihnen

This is a preview of subscription content, log in via an institution.

Buying options

Chapter
USD   29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD   69.99
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD   89.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Learn about institutional subscriptions

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

Literatur

Liteatur zu 17.1

  1. Drotar D, Baskiewicz A, Irvin N, Kennell J, Klaus M (1975) The adaptation of parents to the birth of an infant with a congenital malformation: a hypothetical model. Pediatrics 56:710–717

    PubMed  CAS  Google Scholar 

  2. Götz I (1996) Psychosocial background of families with a child with cystic fibrosis. Israel J Med Sci 32 (suppl):66–67

    Google Scholar 

  3. Jedlicka-Köhler I, Götz M, Eichler I (1996) Parents’ recollection of the initial communication of the diagnosis of cystic fibrosis. Pediatrics 97:204–209

    PubMed  Google Scholar 

  4. Ullrich G (1993) Psychosoziale Versorgung bei Mukoviszidose. Lang, Frankfurt

    Google Scholar 

  5. Walker LS, Van Slyke D, Newbrough DR (1992) Family resources and stress: A comparison of families of children with cystic fibrosis, diabetes, and mental retardation. J Pediatr Psychol 17:327–343

    Article  PubMed  CAS  Google Scholar 

Liteatur zu 17.2

  1. Beresford BA (1994) Resources and strategies: how parents cope with the care of a disabled child. J Child Psychol Psychiatry 35:171–209

    Article  PubMed  CAS  Google Scholar 

  2. Bluebond-Langner M (1991) Living with cystic fibrosis: The well sibling’s perspective. Med Anthropol Q 5: 133 –152

    Article  Google Scholar 

  3. Götz I (1996) Psychosocial background of families with a child with cystic fibrosis. Israel J Med Sci 32 (Suppl): 66–67

    Google Scholar 

  4. Minuchin S (1979) Familie und Familientheorie. Theorie und Praxis struktureller Familientherapie. Lambertus, Freiburg

    Google Scholar 

  5. Patterson JM, Budd J, Goetz D, Warwick WJ (1993) Family correlates of a 10-year pulmonary health trend in cystic fibrosis. Pediatrics 91:383–389

    PubMed  CAS  Google Scholar 

Liteatur zu 17.3

  • Boyle IR, di-Sant’Agnese PA, Sack S, Millican F, Kulczycki LL (1976) Emotional adjustment of adolescents and young adults with cystic fibrosis. J Pediatr 88:318–326

    Article  PubMed  CAS  Google Scholar 

  • Bühlmann U (1992) Chronische Krankheit und Adoleszenz. Schweiz Med Wochenschr 122:88 – 93

    PubMed  Google Scholar 

  • Cappelli M, McGrath PJ, MacDonald NE, Katsanis J, Lascelles M (1989) Parenteral care and overprotection of children with cystic fibrosis. Br J Med Psychol 62:281–289

    Article  PubMed  Google Scholar 

  • Cappelli M, McGrath PJ, Heick CE, MacDonald NE, Feldmann W, Rowe P (1989) Chronic disease and ist impact. The adolescenf’s perspective. J Adolesc Health Care 10: 283–288

    Article  PubMed  CAS  Google Scholar 

  • Carr K (1995) Using Orem’s model in the care of adolescents. Nurs Times 91:36–37

    PubMed  CAS  Google Scholar 

  • Conway SP (1998) Transition from paediatric to adult-orien-tated care for adolescents with cystic fibrosis. Disabil Rehabil Jun-Jul 20:209–216

    Article  CAS  Google Scholar 

  • Fanos JH (1997) Developmental tasks of childhood and adolescence: implications for genetic testing Am J Med Genet 71:22–28

    Article  CAS  Google Scholar 

  • Fitzaptrick SB, Rosenstein BJ, Langaum TS (1986) Diagnosis of cystic fibrosis during adolescence. J Adoles Health Care 7: 38–43

    Article  Google Scholar 

  • Goldberg B (1990) Children, sports, and chronic disease. Phys Sportsmed 18:45–50,53–54,56

    Google Scholar 

  • Hames A, Beesley J, Nelson R (1991) Cystic fibrosis: What do patients know, and what else would they like to know? Respir Med 85:389–392

    Article  PubMed  CAS  Google Scholar 

  • Sinnema G, Bonarius HC, Van der Laag H, Stoop JW (1988) The development of independence in adolescents with cystic fibrosis. J Adolesc Health Care 9:61–66

    Article  PubMed  CAS  Google Scholar 

Liteatur zu 17.4

  • Boyle IR, di-Sant’Agnese PA, Sack S, Millican F, Kulczyki LL(1976) Emotional adjustment of adolescents and young adults with cystic fibrosis J Pediatr 88:318–326

    Article  PubMed  CAS  Google Scholar 

  • Cromer BA, Enrile B, McCoy K, Gerhardstein MJ, Fitzpatrick M, Judis J (1990) Knowledge, attitudes and behaviour related to sexuality in adolscents with chronic disability. Dev Med Child Neurol 32:602–610

    Article  PubMed  CAS  Google Scholar 

  • Johannesson M, Carlson M, Brucefors AB, Hjelte L (1998) Cystic fibrosis through a female perspective: psychosocial is-sues and Information concerning puberty and motherhood. Patient Educ Couns 34:115–123

    Article  PubMed  CAS  Google Scholar 

  • Lester LA,Lemke A,Levinson D,Mahowald MB (1995) The Human Genome Project and women cystic fibrosis: A case study. J Womens Health 4:623 – 635

    Article  Google Scholar 

  • Okada H, Yoshimura K, Fujioka H, Tatsumi N, Gotoh A, Fujisawa M, Gohji K, Arakawa S, Kato H, Kbayashi SI, Isojima S, Koshida M, Kamidono S (1999) Assisted reproduction technology for patients with congenital bilateral absence of vas deferens. J Urol 161: 1157–1162

    Article  PubMed  CAS  Google Scholar 

  • Pieters M, Govaerts L, Halley D, In-’t-Veld P (1998) Cystic fibrosis and reproduction. Tijdschr Fertil 12:30–33

    Google Scholar 

  • Sawyer SM, Phelan PD, Bowes G (1995) Reproductive health in young women with cystic fibrosis: Knowledge, behaviour and attitudes J Adolesc Health 17:46–50

    Article  PubMed  CAS  Google Scholar 

  • Sawyer SM, Tully M-AM, Dovey ME, Colin AA (1998) Reproductive health in males with cystic fibrosis: Knowledge, attitudes, and experiences of patients and parents. Pediatr Pulmonol 25:226–230

    Article  PubMed  CAS  Google Scholar 

  • Zeltzer L, Kellerma J, Ellenberg L, Dash J, Rigler D (1980) Psychologie effects of illness in adolescence. II Impact of illness in adolescents — crucial issues and coping styles. J Pediatr 97:132–138

    Article  PubMed  CAS  Google Scholar 

Liteatur zu 17.5

  • Robinson WM, Ravilly S, Berde C, Wohl ME (1997) End-of-life care in cystic fibrosis. Pediatrics 100:205–209 Tonelli MR (1998) End-of-life care in cystic fibrosis. Curr Opin Pulm Med 4:332–336

    Google Scholar 

  • Warner JO (1991) Heart-lung transplantation: all the facts. Arch Dis Child 66:1013–1017

    Article  PubMed  CAS  Google Scholar 

  • Westwood AT (1998) Terminal care in cystic fibrosis: hospital versus home? Pediatrics 102:436–437

    Article  PubMed  CAS  Google Scholar 

Download references

Authors

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2001 Springer-Verlag Berlin Heidelberg

About this chapter

Cite this chapter

Bühlmann, U., Götz, I. (2001). Psychosoziale Entwicklung und Betreuung des CF-Kranken. In: Reinhardt, D., Götz, M., Kraemer, R., Schöni, M.H. (eds) Cystische Fibrose. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-56796-4_17

Download citation

  • DOI: https://doi.org/10.1007/978-3-642-56796-4_17

  • Publisher Name: Springer, Berlin, Heidelberg

  • Print ISBN: 978-3-642-63172-6

  • Online ISBN: 978-3-642-56796-4

  • eBook Packages: Springer Book Archive

Publish with us

Policies and ethics