No abstract

The self-concept of 105 children (8 to 11 years) and adolescents (12 to 18 years) with cleft lip and/or palate (CLP) was studied using the Piers-Harris Children's Self-Concept Scale and selected demographic and medical variables. Results indicated that most (98%) of children had average or above average self-concept scores. Further analysis, however, demonstrated an interaction between age and gender: adolescent girls experienced a more negative self-concept in comparison to younger girls and adolescent boys experienced a more positive self-concept in comparison to younger boys. In addition, popularity cluster scores for all children were below the mean for the normed population. Because children with CLP have additional difficulties (i.e., facial disfigurement, speech and language deficits, multiple surgeries), professionals should intercede to prevent or interrupt negative psychosocial outcomes, particularly for adolescent girls.

The self-concept of 105 children (8 to 11 years) and adolescents (12 to 18 years) with cleft lip and/or palate (CLP) was studied using the Piers-Harris Children's Self-Concept Scale and selected demographic and medical variables. Results indicated that most (98%) of children had average or above average self-concept scores. Further analysis, however, demonstrated an interaction between age and gender: adolescent girls experienced a more negative self-concept in comparison to younger girls and adolescent boys experienced a more positive self-concept in comparison to younger boys. In addition, popularity cluster scores for all children were below the mean for the normed population. Because children with CLP have additional difficulties (i.e., facial disfigurement, speech and language deficits, multiple surgeries), professionals should intercede to prevent or interrupt negative psychosocial outcomes, particularly for adolescent girls.

Caring for disabled children has become increasingly the responsibility of parents, even when the medical care is complex. To assess the time commitment required, 133 mothers of disabled children were asked to estimate by specific task categories the extra time required to care for the children. Total average daily care time was reported at 12 hours and 6 minutes, with 6 hours and 30 minutes consumed in "vigilant" tasks (i.e., watching a child who cannot be left alone and/or providing emotional support). Multiple regression analysis showed an increase in total caregiving hours associated with a younger child who was more physically and mentally impaired, and who required more medical treatments. The amount of time required by parents to care for their chronically ill children of necessity results in lost opportunities. Because this burden is experienced primarily by women and because professional nurses could alleviate some of the burden, this issue deserves further study.

In the 1980s home care, in contrast to hospital care, was reported substantially to reduce costs for third-party payers who provided funding for technology-assisted children. Savings were realized primarily because parents substituted for nurses, eliminating or reducing those costs. Third-party payers' savings thus were directly related to the number of hours parents assumed care. Because home care relies on parents doing some of the work of nurses, decisions regarding nursing hours must consider family factors in addition to medical factors. We evaluated the number of nursing hours 31 Minnesota families with technology-assisted children received, as well as the factors that determined the allotment of nursing hours. Most families (96.8%) received some hours of nursing hours. Most families (96.8%) received some hours of professional nursing care per day, and 16.1% received 24-hour care. Multiple regression, however, showed that family factors, rather than the child's medical condition, influenced the number of hours, with married, lower-income families with a younger child receiving the fewest. Further discussion and study are recommended to understand more fully the impact family factors have on the allotment of nursing hours and home care costs.