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Keywords:

  • caregiver burden;
  • management;
  • Parkinson's disease

In this study, we examined how the perceived burdens of caregivers influence how people with Parkinson's disease (PD) manage their condition. Burden has previously been defined as the extent to which caregivers perceive that their health, social life, and financial status are being adversely affected because of their care giving. We hypothesized that when caregivers perceive that their burden is increasing, the level of management by PD patients of their disease decreases. A purposive sample of 41 couples in which one spouse or partner had PD was obtained through physician referrals, PD educational programs, and support groups in six Midwestern states. Twenty-eight of the PD patients were men and 13 were women; their spouses or partners included 28 women and 13 men. How patients managed the disease was measured with the Management of Parkinson's Disease Instrument, developed by the first author. The Zarit Perceived Burden Inventory was used to measure the caregivers' perceived burdens. A significant path (p < .02) was noted between the spouse or partner's perceived burden of care and the patient's management of the disease (β = –.067). A path coefficient of β = −365 was obtained. The role of the rehabilitation nurse in the relationship of caregiver and care recipient is that of counselor, educator, and supporter.