QUALITY OF LIFE OF NON-INSTITUTIONAL CAREGIVERS OF SCHIZOPHRENIC PATIENTS- CONTRIBUTION OF QUALITATIVE INTERVIEWS TO QUESTIONNAIRE GENERATION

Author(s)

Auquier P1, Simeoni MC1, Azorin JM2, Lançon C2, Toumi M3, 1Public Health Department, Marseilles, France; 2CHU Sainte Marguerite, Marseilles, France; 3Lundbeck SA, Paris, France

OBJECTIVES: The detrimental effects of hospitalisation and developments in psychopharmaceutical, psychotherapeutic and social treatments led to deinstitutionalization. Proxies of patients, relatives or friends, have had to learn to cope with caregiving tasks. Facilitating the coping of the caregivers should ensure a better quality of caregiving, notably in terms of therapeutical observance. An exhaustive literature review found 9 instruments for caregivers of schizophrenic patients. Five of them are self administered, but none of those covering mental, psychological and social fields have been widely validated and accepted within the scientific community, none are available in French. We report the first step of development of a specific, multidimensional, self-administered instrument measuring the quality of life of non-institutional caregivers of schizophrenic patients. METHODS: Face-to-face interviews were conducted with non-institutional caregivers of schizophrenic patients. Their content was analysed to generate a large number of candidate items covering all-important aspects of caregivers’ quality of life. Eighteen interviews were performed: 11 mothers and 7 fathers aged from 48 years to 71. RESULTS: Content analysis identified topics covering mental (worrying, emotional over-involvement, and suffering, guilt, fair of stigma, of future, loneliness, disillusion, anxiety, feeling of usefulness, self esteem…) physical (fatigue, disruption of sleep…) and social (relationships with the patient, friends, relatives, health workers, occupation, leisure…) fields. Negative as well as positive impact was identified. CONCLUSIONS: These results were compared to the domains described in the literature. This step led to the generation of about 100 questions and the validity of this questionnaire will be studied on 400 caregivers.

Conference/Value in Health Info

2001-05, ISPOR 2001, Arlington, VA, USA

Value in Health, Vol. 4, No. 2 (March/April 2001)

Code

PMH21

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Mental Health

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