2001 Volume 5 Issue 1 Pages 34-41
Purpose：The purposes of this study were to investigate the subjective burden on caregivers of caring for amyotrophic lateral sclerosis(ALS)patients at home, and to identify the characteristics and factors in patients and caregivers that were related to burden.
Methods：A questionnaire was distributed in August 2000 to all patient members of the Japan ALS Association and their families. Returned questionnaires were used to analyze 328 caregivers of ALS patients at home. The questionnaire included questions on demographic characteristics of patients and caregivers, subjective care burden and related factors regarding patients, caregivers and social support resources.
Result：Female caregivers for ALS patients comprised 76.3% of the sample population. In the majority of cases the relationship to the patient was that of a spouse (81.0%). Mean age was 56.7 years old (SD:10.9). The score of burden was rather high. Three factors characteristic of caregivers for ALS patients were identified through factor analysis, using a principal factor method with varimax rotation. These factors were “mental exhaustion” “anticipatory anxiety” and “positive caregiving attitude”.
Subjective care burden scores were significantly higher in the subgroups of elderly caregivers, male caregivers, primary caregivers with alternative caregivers, those reporting longer periods of daily care, and those feeling that their household budgets were insufficient to bear the necessary costs (p<0.05).Independent variables of age, gender, use of alternative caregivers, daily care duration and feelings regarding household budgets were analyzed using quantitative I-type analysis. As a result, subjective care burden was observed to be most significantly increased when caregivers were spending a long time every day involved in care activities, followed by the those with alternative care arrangements, and feeling under budgetary pressure, respectively.
Conclusion：These findings suggest that nurses are in a position to recognize a number of risk factors presented by caregivers.Older caregivers taking care of patients for extended periods every day and feeling financial stress due to caregiving are particularly likely to experience elevated levels of subjective care burden.Nursing staff should therefore be aware of potential opportunities to avert a crisis.
