title: [Effects of Parkinson's disease on quality-of-life patients' spouses: a qualitative survey].
abstract: BACKGROUND
  Spouses play a major role as care givers for their partners with Parkinson's disease. This de facto part of family nursing turns out to be so demanding that they often feel isolated. While spouses may have access to financial and technical aids, but no specific psychological support is available to assist them in coping with the difficulties they have to face. Supporting and educating spouses thus appears today to be a real need.
  
  
  METHODS
  Wishing to create an appropriate support program responding to the needs and expectancies of spouses of Parkinson's disease, we conducted a study designed to measure the effects of Parkinson's disease on spouses' quality-of-life and identify the priority needs in terms of information and support. This study included the spouses of 14 patients who participated in semi-directive individual interviews and a focus group.
  
  
  RESULTS
  The data collected shows that spouses experience great disarray when faced with the disease. Their perception of Parkinson's disease has a strong anxiogenic effects. Caring for their spouse on a day to day basis creates a permanent atmosphere of stress with an insecure feeling generating tensions and major frustrations. Most of the spouses do not allow themselves any break and are overwhelmed with ambivalent feelings. They experience a kind of hostility towards their spouse and at the same time feel guilty for their attitude and also for their helplessness. The disease also leads to an impoverishment of the couples' social network, due to reduced autonomy and fear of other people's way of looking at them.
  
  
  CONCLUSIONS
  Our study confirms the usefulness of organizing an educational support program for these spouses who often feel very lonely and helpless when confronted with their partner's disease.
authors: EduSanté, 2 rue de la Republique, 92170 Vanves. christiane.dressen@edusante.fr
authors: C
authors: C
authors: Dressen
authors: J-P
authors: JP
authors: Brandel
authors: A
authors: A
authors: Schneider
authors: Y
authors: Y
authors: Magar
authors: D
authors: D
authors: Renon
authors: M
authors: M
authors: Ziégler
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001007:Anxiety / Q000523:psychology; D017028:Caregivers / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D006801:Humans; D007406:Interview, Psychological; D008297:Male; D008875:Middle Aged; D010300:Parkinson Disease / Q000523:psychology*; D011788:Quality of Life; D012944:Social Support