[Anorectal malformations and difficulties to talk about it. Results of a qualitative study].
Anorectal malformations cause life long conditions, making it necessary to find ways of communicating the disability in the social context. Incontinence, regular enemas, genital reconstruction, catheterization and scares are just some of the common difficulties affected people have to live with. Intimate disabilities like anorectal malformations cause feelings of shame and embarrassment, and are taboo in our society. Experiences of rejection or just the fear of it cause affected people to hide their disability. In a qualitative study, affected young adults talked about the impact of this disability on their lifes. All interviewees started to hide their condition sometime in older childhood and early adolescents. After a struggling process, torn between fears of discovery and rejection all of them found ways to communicate their condition. All interviewees described revealing their condition in stages and only to certain social groups. Trust is the main prerequisite for revelation. Trust has two aspects, first the person needs to trust that the information will not be spread and second there needs to be trust that the other person will be able to understand and accept the person despite their condition. Support through family, friends, and peers in a support group are helpful. Important in this process is once ability to accept their own condition.
YAI/National Institute for People with Disabilities, NY, NY 10001-2382, USA. Johanna.Berglein@baruchmail.cuny.edu
Johanna
J
Berglein
D000293:Adolescent; D001006:Anus, Imperforate / Q000523:psychology* / Q000601:surgery; D005242:Fecal Incontinence / Q000523:psychology*; D005260:Female; D006801:Humans; D033183:Interdisciplinary Communication; D007406:Interview, Psychological; D008297:Male; D010348:Patient Care Team; D011183:Postoperative Complications / Q000523:psychology; D011788:Quality of Life / Q000523:psychology; D012650:Self Disclosure; D012752:Shame; D012944:Social Support; D013609:Taboo; D035502:Trust; D055815:Young Adult
Anorektale Fehlbildung: Von der Schwierigkeit dariber zu reden--Ergebnisse einer qualitativen Studie.