Psychological obstacles to genetic education
Scandinavian Journal of Social Medicine
|January 1, 1983
Summary
Families with aspartylglucosaminuria showed poor acceptance of medical information, reacting emotionally. Attitudes varied, highlighting the need for early, repeated personal communication for better understanding of this genetic disease.
Area of Science:
- Medical Genetics
- Psychology
Background:
- Aspartylglucosaminuria (ASG) is a progressive autosomal recessive lysosomal storage disease.
- Understanding family responses to genetic disorders is crucial for patient care.
Purpose of the Study:
- To investigate medical knowledge and psychological reactions in families affected by aspartylglucosaminuria.
- To analyze family attitudes towards the disease and affected individuals.
Main Methods:
- Families with ASG received medical information primarily in written form.
- Qualitative assessment of information reception and emotional responses.
- Categorization of attitudes towards the disease and patients.
Main Results:
- Limited acceptance of provided medical information was observed.
- Conversational information transfer yielded minimal value and provoked intense emotional reactions.
- Family attitudes were categorized as rational (30%), defensive (50%), and hostile (20%).
Conclusions:
- Written information alone is insufficient for families affected by ASG.
- Effective communication strategies must address emotional responses and individual attitudes.
- Early and repeated personal communication is vital for improving understanding and support in families with genetic diseases like ASG.
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