[22q11.2 deletion: handicap-related problems and coping strategies of primary caregivers].
OBJECTIVE
To investigate handicap-related problems of children and adolescents with 22q11.2 deletion syndrome and their primary caregivers' coping strategies.


METHODS
Primary caregivers of 153 subjects aged 2-16 years were anonymously asked to fill out questionnaires, e.g., the Handicap Related Problems for Parents Inventory.


RESULTS
Primary caregivers of 96 subjects (53 males, 43 females; mean age: 7;0 [2;1-16;11] years) sent back questionnaires. Patient's behaviour and discipline were the most important handicap-related problems. Significant correlations could be found between the patient's age and his/her relationship with the primary caregiver (rho=0.228; p=.029) and other family members (rho=0.293; p=.004). Compared to other parents of physically handicapped children or those with multiple handicaps, these parents did not experience increased stress. The more the coping strategies "self-fulfillment" and "intensification of partnership" were used, the lower parental stress was (p=.012, p=.025, respectively). "Focusing on the handicapped child" was positively correlated with high parental stress (p=.000).


CONCLUSIONS
With regard to parental stress and coping strategies, primary caregivers of children and adolescents with 22q11.2 deletion do not significantly differ from other parents of physically handicapped children. As handicap-related family problems increase with the patient's age, a growing need for counseling, especially for aspects of parenting and discipline, and for treatment can be presumed.
Briegel
Wolfgang
W
Klinik für Kinder- und Jugendpsychiatrie und Psychotherapie, Leopoldina-Krankenhaus, Schweinfurt. wbriegel@leopoldina.de
Schneider
Marco
M
Schwab
K Otfried
KO
D000015:Abnormalities, Multiple / Q000235:genetics* / Q000523:psychology; D000223:Adaptation, Psychological; D000293:Adolescent; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002653:Child Behavior Disorders / Q000175:diagnosis / Q000235:genetics* / Q000523:psychology; D002675:Child, Preschool; D002872:Chromosome Deletion; D002892:Chromosomes, Human, Pair 22 / Q000235:genetics*; D017281:Cost of Illness; D002658:Developmental Disabilities / Q000235:genetics / Q000523:psychology; D019988:Children with Disabilities / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D010552:Personality Assessment / Q000706:statistics & numerical data; D010641:Phenotype; D011594:Psychometrics; D011788:Quality of Life / Q000523:psychology; D012657:Self-Help Groups; D012917:Social Adjustment