Parenting children with anorectal malformations : implications and experiences

Parents play a crucial role in the life of a child suffering from an anorectal malformation (ARM), since their guidance contributes to the degree to which the child learns to cope with his or her disability. We investigated whether they experience stress in parenting such a child and also attempted...

Full description

Saved in:

Bibliographic Details
Published in:	Pediatric surgery international Vol. 13; no. 5-6; pp. 377 - 383
Main Authors:	HASSINK, E. A. M, BRUGMAN-BOEZEMAN, A. T. M, ROBBROECKX, L. M. H, RIEU, P. N. M. A, VAN KUYK, E. M, WELS, P. M. A, FESTEN, C
Format:	Journal Article
Language:	English
Published:	Heidelberg Springer 01-07-1998 Berlin Springer Nature B.V
Subjects:	Abnormalities, Multiple - etiology Abnormalities, Multiple - psychology Adolescent Anal Canal - abnormalities Biological and medical sciences Child Child Behavior - psychology Child, Preschool Fecal Incontinence - diagnosis Fecal Incontinence - etiology Fecal Incontinence - psychology Female Gastroenterology. Liver. Pancreas. Abdomen Humans Infant Male Malformations Medical sciences Parent-Child Relations Parenting Quality of Life Rectum - abnormalities Severity of Illness Index Stomach. Duodenum. Small intestine. Colon. Rectum. Anus Stress, Psychological - psychology Surveys and Questionnaires Human Malformation Digestive diseases Intestinal disease Anal incontinence Child Anorectal disease Parent child relation
Online Access:	Get full text
Tags:	Add Tag No Tags, Be the first to tag this record!

Description
Summary:	Parents play a crucial role in the life of a child suffering from an anorectal malformation (ARM), since their guidance contributes to the degree to which the child learns to cope with his or her disability. We investigated whether they experience stress in parenting such a child and also attempted to identify somatic or behavioral characteristics in the child that influence the stress of parenting. The parents of 109 children (69 males, 40 females; median age 5.9 years, range 1-18 years) with an ARM (58 low, 10 intermediate, 41 high) were studied. The Nijmegen Questionnaire on Child-rearing Situations (NQCS) was used to investigate the existing parenting situation. Behavioral characteristics of the children were studied by means of the Child Behaviour Checklist (CBCL) and the Teacher Report Form (TRF). In a semi-structured interview, we investigated how parents experienced the implications of the disability in everyday life with their child. Our study showed that as far as the perception of parenting stress is concerned, parents of children with an ARM do not differ from those with healthy primary-school children. Within the group of parents with ARM-afflicted children, the parents of older, incontinent children experienced relatively more stress, especially when the child concerned was male. With regard to the children's behavior, the parents and teachers under investigation did not report a higher than normal incidence of deviant behavior. However, when individual parents observed difficult behavior in their child, they found it harder to deal with than the incontinence for feces. Regarding the implications of the disorder for their everyday lives, parents were concerned and indicated a need for specific counselling. We conclude that having a child with a somatic affliction, in this case an ARM, does not automatically imply that the parents experience child-rearing problems. However, certain groups of parents are more at risk, i.e., parents with older, incontinent sons and parents with children exhibiting behavioral problems. In addition, our study shows that parents do have difficulties in coping with the implications of the disorder and express a need for support. We feel that patient care can be improved if aid is tailored to these specific problems.
Bibliography:	ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23
ISSN:	0179-0358 1437-9813
DOI:	10.1007/s003830050344