22q11.2 deletion: Handicap-related problems and coping strategies of primary caregivers

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. Method: 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 (p = 0.228; p =.029) and other family members (p = 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-fulfilment" 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.