Online First Nr206

Psychiatr. Pol. ONLINE FIRST Nr 206: 1–20

Published ahead of print 30 December 2020
 
 
Aleksandra Lewandowska-Walter, Agnieszka Trawicka,
Marta Bogdanowicz, Robert Sabiniewicz, Lidia Woźniak-Mielczarek

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Summary
Aim. The purpose of the study was to analyze the functioning of a family as perceived by a person with Marfan syndrome and to look for relationships between the characteristics of the system and the overall quality of life of the ill.
Material and method. Participants included 33 individuals with Marfan syndrome and 33 individuals without chronic illness. We used the Family Evaluation Scale – the Polish adaptation of the FACES-IV by D.H. Olson and the Satisfaction with Life Scale (SWLS) by Diener, Emmons, Larson and Griffin.
Results. People with Marfan syndrome perceive their families as significantly less coherent and significantly more disengaged than people without chronic illness. This family system of people with Marfan syndrome can be characterized by low scores on the “Cohesion” and “Flexibility” and high scores on the other four scales showing the level of imbalance of the family as a system, which makes this family profile similar to an ‛unbalanced’ system. Life satisfaction of people with Marfan syndrome correlated positively with “Cohesion”, “Flexibility” and “Family Satisfaction” as features of family system perceived by them.
Conclusions. The obtained results confirm the importance of supporting families of people with Marfan syndrome and specialist help aimed at dealing with emotional burden related to the health of the patient.


ISSN 0033-2674 (PRINT)

ISSN 2391-5854 (ONLINE)


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