The structure of informal social networks of persons with profound intellectual and multiple disabilities.

BACKGROUND: Persons with less severe disabilities are able to express their needs and show initiatives in social contacts, persons with profound intellectual and multiple disabilities (PIMD), however, depend on others for this. This study analysed the structure of informal networks of persons with PIMD. MATERIALS AND METHODS: Data concerning the number, type and frequency of contacts were collected in 205 persons with PIMD. RESULTS: The mean number of contact persons was 5.1 (range: 0-26, SD: 4.2) per year. 79.4% of the contact persons are family, with an average of 72.3 contacts per year. Parents had significantly more contact compared to the other informal contact persons. In 2.2% of the sample contacts with peers were seen. CONCLUSIONS: The informal networks of persons with PIMD consist mainly of family. The question arises how informal networks can be expanded and which role professionals have in this process.

Informal social networks of people with profound intellectual and multiple disabilities: relationship with age, communicative abilities and current living arrangements.

BACKGROUND: People with profound intellectual and multiple disabilities (PIMD) have limited informal social contacts. Research to determine the factors which can positively influence establishing sound informal social contacts is required. MATERIALS AND METHODS: Regression analysis for 200 people with PIMD was used to analyse how age, communicative abilities and current living arrangements were related to the number and frequency of their contacts. RESULTS: Only age was negatively related to both the number and frequency of social contacts. Current living arrangements related only to the frequency of contacts. Communicative abilities related to neither. CONCLUSIONS: Like people with intellectual disabilities, age and living arrangements are related to the informal social networks of people with PIMD. However, for people with PIMD, these networks are already more limited. Therefore, professionals need to be attentive to the maintenance and/or expansion of the social networks of people with PIMD at an early stage.

Abnormal fetal behavioural state regulation in a case of high maternal alcohol intake during pregnancy.

In the near term human fetus disturbed behavioural state organization has been found in cases of intra-uterine growth retardation or maternal type-1-diabetes. The present case report describes abnormal fetal behavioural state organization found in combination with maternal alcohol abuse during pregnancy. The abnormalities included frequent interruptions of the periods of concordant association of 2F-parameters, reflected by a high proportion of no-coincidence, and spontaneous awakenings (State 4F), always following stable periods of State 1F. The latter phenomenon was not found thus far by us or others, neither in normal nor in complicated pregnancies. After birth normal state organization was found. It is suggested that the abnormalities in fetal behaviour might have been due to maternal alcohol abuse, whereas a possible withdrawal effect might have occurred in utero.

Family distances as a measure of hidden consanguinity. A reappraisal.

We compared the family distances of patients with autosomal recessive disorders with those of a random control group and a matched control group. Only in the great-grandparental generation were weak-significant differences found. We also found that the family distances of persons with an urban origin were significantly larger than those of persons with a rural origin. In our study, family distance seems to be a more powerful measure of hidden consanguinity than the parental distance.