Abstract
Recent advances in genetic techniques have increased the likelihood of predictive testing for genetic disorders such as Cystic Fibrosis (CF) , Duchenne muscular dystrophy (Dmd) and Huntington's Chorea (HC) . The question arises as to whether earlier diagnosis, via pre dictive testing would enhance the coping of individuals at risk for carrying the CF, HC or Dmd gene, by facilitating earlier lifestyle adjustment, or whether such testing would increase the psychological burden of those with experience of genetic disability.The aim of this study was to investigated the psychosocial factors influencing desire for knowledge and predictive testing among parents of children suffering from CF, parents of boys suffering from Dmd and those at risk for HC, plus their partners. Using a semi-structured interview schedule and a battery of psychological tests, including the Crown Crisp Experiential Index, the Just World Scale and the Multidimensional Health Locus of Control, 127 individuals were interviewed about their experience of living and coping with inherited disability and their attitudes towards predictive testing.
Differences in experiences and attitudes between disorders were investigated using non-parametric statistics. Loglinear models were used to investigate the impact of various aspects of the individual's previous experience of genetic disability upon their willingness to consider taking a predictive test.
Results indicated that willingness to consider taking a predictive test was influenced by the individual's previous and present experience of the disorder, such as their perception that the condition was not particularly disabling, nor limiting in relation to family life. Test support was also influenced by their world view, which included the rejection of alternative means of family planning and self-blame. The individual's appreciation of genetic risk, understanding of factual information about genetic disability and psychological profile did not influence predictive test support.
Study findings are discussed with reference to the Health Belief Model, and attribution theory. The implications of study findings for genetic counselling in response to predictive test issues are discussed.
| Date of Award | Dec 1990 |
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| Original language | English |
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| Supervisor | Stuart Lewis (Supervisor) |