CHRONIC SORROW IN MOTHERS OF SCHOOL-AGE CHILDREN WITH A MYELOMENINGOCELE DISABILITY.
Contributors: Boston University.
Published: 1989
Number of pages: 284
Subjects: Health Sciences, Nursing.; Health Sciences, Public Health.
Description: This study investigated the occurrence of chronic sorrow in mothers of children with myelomeningocele during the children's school-age period of development. The subjects were 47 mothers of children between their fifth and thirteenth birthdays who attended any of four myelodysplasia clinics in two New England states during the data collection period. Mothers who met the criteria of the study were approached individually by the investigator in the clinics and asked to participate. Consenting mothers were interviewed by telephone, using the Chronic Sorrow Questionnaire, a structured guide of 30 selected-response and open-ended questions developed by the investigator. The questions were designed to answer five research questions by identifying: (a) the occurrence of chronic sorrow, (b) the milestones or events at which it recurs, (c) factors that are helpful or not helpful in coping with this feeling, (d) practical advice to be given to other mothers, and (e) suggestions for nurses caring for these families.

Content analysis of the responses was utilized to identify themes for categorization and coding. Interrater reliability was tested by calculating a kappa coefficient for each theme, with no value falling below.72. The reported intensity of the chronic sorrow was correlated with selected variables that reflected the data collected about the mothers, the families, and the children, using Kendall's tau-b for statistical analysis, at a.05 significance level.

Ninety-one percent of the mothers interviewed were found to experience chronic sorrow. Its occurrence and its intensity were not significantly related to any of the selected variables. Milestones or events at which sorrow recurred included management crises, comparisons with developmental and social norms, unending caregiving, and other painful experiences. A variety of helpful and nonhelpful factors were disclosed which were reflected in the practical suggestions offered to other mothers.

The study suggests that by assuming the roles of caring professional, empathetic presence, teacher/expert, role model, caregiver, facilitator, permission-giver, and support person, nurses can assist mothers of children with a myelomeningocele disability in coping with their feelings and with their responsibilities as the children's primary caregivers.
Notes: Source: Dissertation Abstracts International, Volume: 50-06, Section: B, page: 2334.

Thesis (D.N.SC.)--BOSTON UNIVERSITY, 1989.

School code: 0017.