Portland State University. School of Social Work
Date of Publication
Master of Social Work (MSW)
Myelomeningocele, Children with disabilities -- Family relationships
1 online resource (70 leaves : ill. ; 28 cm.)
This was an exploratory-descriptive study of fifty children afflicted with myelomeningocele, ages one through six, who were known to the Myelomeningocele Clinic of the Crippled Children’s Division. The study identified the degree of multiple physical, emotional, and environmental stress factors that families must be prepared to cope with. The study identified eleven factors felt to play an important role in family dynamics and how they related to the families response to their child with myelomeningocele. The factors were tested and found to be valid by the use of a pre-test on ten case records. Medical records were then obtained from the Crippled Children's Division for chart review purposes and the appropriate material was recorded. Scores were developed that indicated the degree of stress ranging from minimal involvement to maximum involvement. The study found that a majority of the families in the sample live within commuting distance to needed medical services, have transportation available to them and generally utilize the necessary medical care appropriately. The remainder of the study showed, however, that families could be expected to face a variety of other problems that could only serve to increase family stress. Most of the families had limited financial resources. Over one-half of the families needed special education for their children. A majority of families had no medical insurance. Fifty-eight percent of the families were found to have additional stressful problems to cope with e. g., marital stress, sibling rivalry, additional ill members, etc. Added to this was the information that the child with myelomeningocele was found to be greatly involved in a multiplicity of medical problems at many different levels of functioning. e. g., orthopedic, bowel, neurosurgical, etc., that would be expected to add to the already stressful family dynamics. Among the recommendations developed was a plea for the expansion of the satellite clinic concept, development of parent groups on a geographical basis, development of educational programs for educators and community service personnel, brief orientation programs for parents with the goal of helping them understand and integrate the health care system that they find themselves in.
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Ferguson, Janet L. and Tweed, Russel, "A study of families with stress related to the care of children with myelomeningocele" (1971). Dissertations and Theses. Paper 1414.