Parental Feeding Behaviors and Weight-Related Concerns in Children With Special Needs.

Parental feeding behaviors and concern about child weight are associated with obesity among youth who are typically developing. Little is known about this relationship among parents of youth with special needs, despite these children having higher obesity risk. This study used an online survey to explore associations among parental feeding behaviors, parent weight concerns, demographics, and child weight status in a sample of 356 parents of children diagnosed with autism spectrum disorder, spina bifida, and Down syndrome. Specific parental feeding behaviors were significantly related to the child's weight and intensified when the parent was concerned about the child's weight. Child's diagnosis, family income, parent age, and parent gender influenced select feeding behaviors. Obesity has significant health ramifications and negatively affects an individual's ability to self-manage, which is crucial in individuals with special needs. These findings present an opportunity for the health care community to educate and promote healthy feeding practices in this vulnerable population.

Adolescents with myelodysplasia: impact of physical disability on emotional maturation.

Certain physical, psychological and social characteristics of 20 adolescents with myelodysplasia are compared to those of age and gender-matched controls. In addition to the obvious physical differences the areas of greatest concern are self-esteem and social-sexual adjustment. Family relations, feelings, and modes of expression were not different in the two groups. Lack of appropriate chores, decreased opportunities to interact and compete with peers, plus uncertainties to interact and compete with peers, plus uncertainties about bowel and bladder continence appear to be the greatest impediments to emotional growth in this physically handicapped group of teenagers. Early recognition of such problems and finding strategies to overcome them are important aspects of the comprehensive care of any person with a chronic disability.

Orthopaedic management of high-level spina bifida. Early walking compared with early use of a wheelchair.

To determine whether it is worth while to encourage patients who have high-level spina bifida to walk at an early age, we compared the cases of thirty-six patients who had participated in a walking program with those of thirty-six patients for whom a wheelchair had been prescribed early in life. The patients in the two groups were matched for age, sex, level of the lesion, and intelligence. Only twelve of the patients who had been able to walk at an early age were still able to do so effectively at the time of this study, when their ages ranged from twelve to twenty years, but still these patients fared somewhat better than the other patients did. The patients who walked early had fewer fractures and pressure sores, were more independent, and were better able to transfer than were the patients who had used a wheelchair from early in life. However, during childhood and early adolescence, the patients who had always used a wheelchair had spent fewer days in the hospital than did those who had participated in the walking program. There were no major differences between the two groups with regard to skills of daily living, function of the hands, and frequency and severity of obesity.

Effects of moderator variables in reducing stress outcome in mothers of children with handicaps.

There have been numerous reports of relationships between stressful life events and outcome dysfunction expressed in physical and/or interpersonal spheres. This study investigated the variables that help buffer mothers from the stresses that result from bearing and rearing a child with a handicap. Stressors related to the handicapped child were scaled (HREC) and a moderate correlation (-0.37) was identified between these stressors and the health and marital adjustment (OUTCOME) of the mother. It was further uncovered that there was a moderator variable affecting the relationship between stressors and outcome, and it protected the mothers from the effects of the stressors. This moderator variable, labeled Resources (RES), consists of emotional support, physical help, etc. in raising the handicapped child. The effect was demonstrated empirically. Using a partial correlation procedure, the influence of RES was statistically held constant and the -0.37 correlation between HREC and OUTCOME dropped to -0.05. This accounts for the finding that those mothers with high stressors but high resources had fewer outcome problems than those with less resources. The study demonstrates the presence of a moderator variable influencing the relationship between life stress and dysfunction.

Families with disabled children: stress and social networks in three samples.

Mothers and fathers of 125 handicapped/chronically ill children were compared with parents of 127 matched nondisabled children from three separate samples with respect to personal stress, marital satisfaction, and social network size and density. Only mothers of disabled children experienced higher levels of stress than comparison parents. No differences were found in marital satisfaction. Few group differences were found for social network variables, although mothers of handicapped children had higher-density networks than comparison mothers. A series of ANOVAs examined differences among the three types of families of handicapped children. Significant differences among the groups were found for social network but not family stress variables. The results are discussed in terms of general differences between families with and without a disabled child, and point to the need to identify patterns within different types of family systems in conducting future research in this area.

Psychological adaptation of siblings of chronically ill children: research and practice implications.

Studies of the psychological adjustment of physically healthy siblings to their sibling's chronic illness indicate that there is no one-to-one correspondence between the presence of a chronic illness and risk for psychological disturbance in nonafflicted children. Although the presence of a chronic illness may increase siblings' subjective distress, effects of a chronic illness on the psychological adjustment of siblings are selective and vary with age, sex, and type of illness. Chronic illness is a stressor which, in interaction with other variables, may contribute to increased risk of psychological disturbance for some siblings. Although the variables which mediate the effects of a chronic illness on siblings are as yet poorly understood, the quality of family functioning and relationships has both direct and indirect effects on siblings and deserves primary consideration in the comprehensive care of chronically ill children. Future research might profitably focus on individual differences in sibling adaptation, especially on factors which contribute to positive adjustment, the role of the family context as a mediating influence, and evaluation of preventive interventions designed to enhance sibling adaptation.

The use of self-modeling to improve the swimming performance of spina bifida children.

The use of edited videotape replay (which showed only "positive" behaviors) to improve the water skills of three spina bifida children, aged 5 to 10 years was examined. A multiple baseline across subjects design was used, and behavioral changes were observed to occur in close association with intervention. One child was given successive reapplications of videotaped self-modeling with continuing improvements. It appears that a useful practical technique has been developed.

Effects of physical exercise on peripheral vision and learning in children with spina bifida manifesta.

The purpose of this research was to investigate the effects of active exercise of the arms on various physiological, perceptual, and cognitive parameters of children with spina bifida manifesta who were aged 9 to 12 yr. Following a 5-min. rest interval, subjects were either not exercised (control days) for a 6-min. period or were exercised (experimental days) for a 6-min. period. Cardiac measures, respiratory function, peripheral vision, and figural learning trials were recorded after exercise. Wilcoxon matched-pairs signed rank tests were computed on the means of the exercise and no-exercise conditions for each measure. Six minutes of active exercise resulted in significant increases in peripheral vision, respiratory and cardiac measures and significant decreases in figural learning trials for these children. A floor effect was noted for the figural learning test. It was concluded that exercise increased blood flow through the lungs allowing for greater oxygen diffusion in the brain and other facilitatory effects resulting in more effective cerebral activity. Curriculum revisions for such children seem to indicate the importance of activity in facilitating subsequent learning.

Cognitive abilities and lipomyelomeningocele.

Ten children with lipomyelomeningocele were evaluated with the WISC--R, the Wide Range Achievement Test--Revised, the Developmental Test of Visual-motor Integration, and the Child Behavior Checklist. These children were consecutive referrals to a birth defects clinic. Unlike their meningomyelocele counterparts, as a group these children appear to be average in their intellectual, academic, and behavioral characteristics. However, they exhibited low average perceptual motor skills, a feature more commonly seen in meningomyelocele.

Recruiting adoptive parents for children with developmental disabilities.

One agency describes a systematic approach to recruitment of prospective adoptive families for children with developmental disabilities. The recruitment methodology, preliminary conclusions, and implications for future recruitment of families are presented.

[The spina bifida patient and his family: psychologic and social aspects. 2]. / Il soggetto affetto da spinal bifida e la sua famiglia: aspetti psicologici e sociali. Parte seconda.

In the second part of the present work the data which was obtained through questionnaires and interviews with 130 families with children affected by spina bifida is presented. Presented first are the immediate sociopsychological aspects of the family when they are informed about the malformation, the derived psychological effects and the preoccupations relating to the life of their child. Then the aspects of the successive social and psychological problems of these parents are presented, and finally the expectations and demands of the same parents following the psychological operations carried out at the centre to the benefit of the children and their families.

[The subject with spina bifida and his family: psychological and social aspects. I]. / Il soggetto affetto da spina bifida e la sua famiglia: aspetti psicologici e sociali. Parte prima.

This paper is to examine the psychological and social effects in spina bifida. In 130 subjects, aged from 4 to 24 years old, the levels of the I.Q. have been studied and they have been distributed into revelant percentual groupings, and the psychologic perception problems of the malformation of the subject have been studied. Finally, dominant psychologic and social problems have also been considered.

[Spina bifida and "psycho-socioaffective" adjustment]. / Spina-bifida et adaptation "psycho socio-affective."

The author has undertaken a critical review of the publications centered on the psychosocio-affective adaptation of spina-bifida. He considered the construction of personality, the socialization, the relations with family, marital and sexual life and the future professional life. Researches and guidance strategies are suggested.

Virtual socialization in adults with spina bifida.

OBJECTIVE: To use spina bifida (SB) as a model of chronic physical disability to study the associations of virtual socialization, friendships, and quality of life (QOL) in adults. DESIGN: Cross-sectional survey. SETTING: Subjects were recruited from residential living facilities, outpatient clinics, and the University of Pittsburgh Medical Center (UPMC) research registry. PATIENTS: Inclusion criteria were age between 18 and 80 years and clinical diagnoses of SB cystica (myelomeningocele) and hydrocephalus. The exclusion criterion was the diagnosis of SB occulta. Sixty-three eligible adults were enrolled, and all completed the study. METHODS: The survey via questionnaire was performed in person or over the telephone. MAIN OUTCOME MEASUREMENTS: Data collected included the World Health Organization's Medical Outcomes Study 26-item Short Form, Economic Self-Sufficiency from the Craig Handicap Assessment and Reporting Technique Short Form, virtual socializing habits, and number of friends. Three linear regression models were performed, each with a unique dependent variable: number of friends, psychological QOL, or social QOL. The following independent variables were included in all models: age, gender, ethnicity, economic self-sufficiency, marital status, education level, lesion level, health status, user group, collection method, and time spent virtually socializing. In addition, each regression model included the dependent variables from the other 2 models in its independent variables. RESULTS: Increased degree of virtual socialization (VS) was associated with a greater number of friends (P = .003, r = .684). Mean (standard deviation) numbers of friends by VS groups were the following: users, n = 4.9 ± 2.7; semi-users, n = 3.8 ± 2.7; and nonusers, n = 2.1 ± 2.3, which represent a 2.3 times greater number of friends between the users and nonusers. The effect of virtual socialization on QOL was also positive, however, not statistically significant. CONCLUSIONS: People with chronic physical disabilities, such as SB, are at high risk for peer rejection and long-term social avoidance. Users of the most immersive forms of virtual socialization, have more real world friends than both semi-users and nonusers. Any form of VS, whether immersive or real time, may improve the opportunity for meaningful social encounters. Prospective intervention studies are needed to elucidate whether a causal positive relationship between virtual socialization and friendships exists. Further research is needed to clarify virtual socialization's impact on QOL; however, the upward trend in all 4 domains of QOL across user groups suggests similar potential benefits.