The onset of a progressive, fatal illness such as Motor Neuron Disease (MND) inevitably results in physical and communication disabilities that impinge on the individuals’ ability to remain functionally independent. The loss of speech as a result of dysarthria, a motor speech disorder, is one of the most profound changes that the person with MND will experience. The decline in the individuals’ speech intelligibility, that negatively influences communication effectiveness, implies that in 80% of cases alternative and augmentative communication (AAC) strategies are required to support the daily communication needs of individuals with MND. The dyadic nature of chronic illness implies that multiple aspects of one of the most important adult relationships, marriage, will be affected. Roles and responsibilities performed by each member of the couple will continually change as the disease progresses. The emotional trauma of adjusting to the unavoidable alteration in their relationship elicits strong emotions such as guilt, anger and frustration. Communication is one of the most constructive ways of dealing with these emotions. The ability of spouses to convey their innermost thoughts, feelings and intimacy through communicative interaction is vitally important in marital communication. The aim of this study was to compare how persons with MND and their spouses perceive changes in their marital communication in relation to the deteriorating speech of persons with MND. Fourteen couples divided into two participant groups, persons with MND and spouses, participated in this non-experimental correlational research study. Data was collected during three visits at six-monthly intervals over a 12 month period. At each of these visits both participant groups completed a variety of objective and subjective measures, of which twenty percent were interrated by independent raters. Results confirmed the inevitable decline in speech intelligibility of persons with MND across the disease progression. The persons with MND did not report a change in their perception of marital communication although their spouses indicated a statistically significant decrease between the first and last visits. Interestingly, there was no statistically significant relationship between the deteriorating speech of persons with MND and the couples’ perception of marital communication, confirming that marital communication was not influenced by decreased speech intelligibility.
Pieterse, Hendrik Lodewyk(University of Pretoria, 2003-07-05)
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