Nordic children with myelomeningocele: the utilization of and satisfaction with health care and medical services.

A study was conducted on utilization of and satisfaction with the health care and medical services among 527 Scandinavian children (aged 4-18) with myelomeningocele (MMC). Data were collected from two sources: a questionnaire distributed to parents in 1984, and patients' medical records. Comparisons were made with a control group comprised of 7,792 children. Over a period of one year, 52% of the MMC group and 6% of the controls were hospitalized. Over 3 months, children with MMC had more contact with specialist care services than had the controls, while contact with primary health care was the same for both groups. Continuity of care and satisfaction with time spent with the physician were both greater among children with MMC than in the control group. Dissatisfaction with medical services was expressed by approximately 10% of the parents of both categories. Such dissatisfaction was found significantly more frequently among Danish parents and well educated mothers. Dissatisfaction with care was not related to either the child's age or the severity of its disability. Danish children with MMC received treatment relatively more frequently from primary care physicians than from specialists. In Sweden, where satisfaction was the greatest, families with children with MMC were supported by local habilitation teams.

[Psychosocial development of children with physical disabilities. Experiences from a Nordic study of 527 children with myelomeningocele]. / Fysisk funktionshaemmede børns psykosociale udvikling. Erfaringer fra et nordisk studie af 527 børn med myelomeningocele.

Data from a Nordic study on children with meningomyelocele (MMC), aged 4-18 years, are related to studies on the social and personal situation of children with physical disabilities. The data were collected in 1984 from medical records and by means of a postal questionnaire. In total 527 children with MMC and 7792 control children were included; the parents of the latter answered the same questionnaire as the former. As many as 80% of the children with MMC were integrated in ordinary school classes. However they had fewer friends and were less active outside home than children in general. Children with MMC need to develop autonomy and independence of their parents, especially with regard to their leisure activities and personal matters including personal hygiene. Concerning personal hygiene, independence could be developed for most of the children by systematic training, even among those who regularly use catheterisation. Both child and parents need support from multidisciplinary habilitation teams in order to develop the coping ability of the child. In school, along with assessment of the disabled child's learning ability, there is also a need to assess its personal and social functioning. According to studies by A. Antonovsky, people who experience their situation as comprehensible, manageable and meaningful are more healthy than others. It seems valuable to apply these three aspects to the way of thinking in work with habilitation.

Children with myelomeningocele: the impact of disability on family dynamics and social conditions. A Nordic study.

Family dynamics and social conditions were studied of 527 children with myelomeningocele aged four to 18 years from Denmark, Finland, Norway and Sweden; the control group was a representative sample of 7792 children of the same age-range and from the same countries. Information was obtained from postal questionnaires and from patients' charts. Overall, there were more similarities than differences between index and control families, the major difference occurring in measures related to the mothers' situation. Variations within groups of index families were in many respects more important than differences between index and control families. In spite of the different welfare systems developed to support families with disabled children, this study clearly showed that the responsibility for the care of the disabled child still lies primarily with the mother. Increased efforts must be made to meet the needs of these mothers.

Nordic children with myelomeningocele. Parents' assessments of the handicap and physicians' classifications of the disabilities.

The differences between parents' assessments of their child's handicap and professionals' assessment of disabilities were studied in 486 Nordic children with myelomeningocele aged 4-18 years. Although disability and handicap are conceptually different, agreement between the parents' assessments of the handicap and the degree of disability according to Lorber's classification was found in 51% of cases. The parents' assessments showed close agreement with overall disability according to Lagergren's method in 45% of cases. The factors most strongly associated with parental assessment of the handicap were the child's motor disability, intellectual functioning, faecal and urinary incontinence and the parents' inclination to feel inadequate with respect to the child's needs. Data from professional assessment of disabilities alone are of limited value in understanding the impact of disabilities on the daily life of a child.

Bowel and bladder control of children with myelomeningocele: a Nordic study.

The urinary and bowel control was studied of 527 children with myelomeningocele aged between four and 18 years. Information was obtained from medical records and by parent questionnaire. 44 had normal urinary control, 50 had a urinary diversion and the remaining 433 had neuropathic bladder without urinary diversion, of whom 31 per cent expressed their bladder manually and 40 per cent used clean intermittent catheterisation (CIC). 60 per cent needed assistance emptying their bladder. Children using CIC were more continent and needed less help, but were more often treated with antibiotics. Of the 527 children, 412 had disturbed bowel control. 212 evacuated their bowels manually, of whom 90 per cent needed assistance. Parents judged urinary incontinence to be very stressful for 37 per cent of the children and faecal incontinence for 33 per cent. The authors conclude that social urinary continence should be defined as the ability to keep dry for three hours or more.

Disability in children with myelomeningocele. A Nordic study.

This study was carried out to evaluate the medical impairments and disability among 527 children with myelomeningocele living in four Nordic countries. The information was extracted form questionnaires and data based on case records. The level of intellectual functioning was fairly high with 76% within normal range (IQ greater than 90). Shunt operations were performed in 68% of the children and 1/3 had had four or more shunt revisions. Twenty-three per cent walked without support. Bladder incontinence was found in 60% of the children whereas 4% were entirely continent. Intermittent catheterisation was used in 36% with higher frequency among girls (48%) than boys (24%). We found a higher incidence of bacteriuria among those who used catheterisation than among those who used manual compression. Bowel control was experienced by 112 (21%) of the children. The overall disability is classified according to Lorbber's 5-graded handicap scale and Lagergren's 3-graded scale. According to Lagergren's scale, 70% suffered form severe overall disability.