Background: Parkinson's is a progressive disease so patients require more and more assistance in everyday life which increase caregivers' burden. Aim of the study was to evaluate effect of instructional guidelines on caregivers' burden of care and quality of life in Parkinson's patients. Design: A quasi-experimental design was used. Setting: The current study was conducted at the neurological outpatient clinics of Benha Teaching Hospital and Benha University Hospital. Subjects: Purposive sample was used in this study. 30% of patients with Parkinson’s and their caregivers were chosen randomly from the mentioned setting, the total number 60 patients with Parkinson’s and 60 caregivers. Tools of data collection: Three tools were used. I- A structured interviewing questionnaire: consisted of 3 parts to assess: 1) demographic characteristics of Parkinson’s patients and their caregivers. 2) The caregiver's knowledge about Parkinson’s disease and caregiver's needs and problems. 3) Caregivers' reported practices regarding assistance in daily living activities of Parkinson's patients. II- Zarit Burden Interview (ZBI) to assess caregivers' burden of care. III-PDQ-39 Questionnaire to assess quality of life for Parkinson's patients. Results: of this study showed; 51.7% of Parkinson's patients aged from 61 to 70 years old, 46.7% of caregivers aged from 46 to 55 years old, 73.7% of them were female. 43.3% were caring for their husbands, 70% provided care for ≥ 4 hours/day. Regarding caregivers knowledge; pre- instructional guidelines, 0%, 13.3% of caregivers had good and average total knowledge scores regarding Parkinson's disease and caregiver's needs and problems which increased to 48.3%, 26.7% post- instructional guidelines respectively. The total scores of caregivers' practices were satisfactory for 16.7 % of them before the instructional guidelines and increased to 81.7 % after the instructional guidelines. 81.7% of caregivers had high burden pre- instructional guidelines which decreased to 10% post- instructional guidelines. 26.7% of Parkinson's patients had moderate total quality of life pre-instructional guidelines which increased to 60 % post-instructional guidelines. Conclusion: This study concluded that: the instructional guidelines had a significant effect on the improvement of the caregivers' knowledge, practices and quality of life in Parkinson's patients. There was a significant decrease in caregivers' burden of care. Recommendations: Further studies should be provided to assess factors that increase caregivers' burden of care and affect their quality of life. Community support should be provided to Parkinson's caregivers. |
