[How could self help support patients and families with anorectal malformations?--Psychosocial help offers of SoMA eV]

Prax Kinderpsychol Kinderpsychiatr. 2010;59(1):5-21. doi: 10.13109/prkk.2010.59.1.5.
[Article in German]


To be born with an anorectal malformation means to suffer from a rare disease. The afflicted viscera and the consequences e. g. incontinence border on a taboo. In most instances it is necessary to have an interdisciplinary and long-term follow up of the patients. Involved children and their families benefit in a special way from the offers of a self-help organization. The feeling not to be alone helps to cope with the strain situation, as do the presented projects and offers which come up with the special needs of the patients. The everyday experience and capacity of the patients can be used to solve problems. On the one hand, self-help represents a pool of knowledge on the other hand it shows to the attending physician or therapist the long-term results achieved. Here a network of the different specialties is crucial. Especially in the psychosocial field where self-help organizations have reached their limits--there is a need for more psychotherapeutical support.

Publication types

  • English Abstract

MeSH terms

  • Adolescent
  • Anus, Imperforate / psychology*
  • Anus, Imperforate / surgery
  • Child
  • Child, Preschool
  • Colostomy / psychology
  • Cooperative Behavior
  • Fecal Incontinence / psychology
  • Female
  • Humans
  • Infant
  • Infant, Newborn
  • Interdisciplinary Communication
  • Male
  • Parenting / psychology
  • Patient Care Team
  • Postoperative Care / psychology
  • Postoperative Complications / psychology
  • Psychosexual Development
  • Puberty / psychology
  • Quality of Life / psychology
  • Self Care / psychology
  • Self-Help Groups*
  • Social Adjustment
  • Social Support