Quality of life in a heterogeneous sample of caregivers of cancer patients: an in‐depth interview study |
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| Authors: | J. MANCINI MD PHD K. BAUMSTARCK‐BARRAU MD M.‐C. SIMEONI MD PHD J.‐J. GROB MD PHD G. MICHEL MD PHD C. TARPIN MD A.‐D. LOUNDOU PHD A. LAMBERT MSC A. CLÉMENT MSC P. AUQUIER MD PHD |
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| Affiliation: | 1. Self‐perceived Health Assessment Research Unit, School of Medicine, Aix‐Marseille University, Marseille, and Public Health Pole, Assistance Publique – H?pitaux de Marseille, Marseille;2. Self‐perceived Health Assessment Research Unit, School of Medicine, Aix‐Marseille University, Marseille, and Clinical Research Unit, Assistance Publique – H?pitaux de Marseille, Marseille;3. Department of Dermatology, Aix‐Marseille University and Sainte Marguerite University Hospital, Marseille;4. Department of Paediatric Haematology, Aix‐Marseille University and Timone Children's University Hospital, Marseille;5. Department of Medical Oncology, Paoli‐Calmettes Institute, Marseille;6. Clinical Research Unit, Assistance Publique – H?pitaux de Marseille, Marseille;7. Centre for Research in Psychology of Cognition, Language and Emotion, Provence University, Aix‐en‐Provence;8. Self‐perceived Health Assessment Research Unit, School of Medicine, Aix‐Marseille University, Marseille;9. Self‐perceived Health Assessment Research Unit, School of Medicine, Aix‐Marseille University, Marseille, and Public Health Pole, Assistance Publique – H?pitaux de Marseille, Marseille, France |
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| Abstract: | MANCINI J., BAUMSTARCK‐BARRAU K., SIMEONI M.‐C., GROB J.‐J., MICHEL G., TARPIN C., LOUNDOU A.‐D., LAMBERT A., CLÉMENT A. & AUQUIER P. (2010) European Journal of Cancer Care
Quality of life in a heterogeneous sample of caregivers of cancer patients: an in‐depth interview study To establish the best approach to develop a quality of life (QoL) questionnaire for cancer‐patient caregivers, this study attempts to identify primary domains of QoL in terms of their impact on a purposive sample of caregivers. Seventy‐seven informal adult caregivers of cancer patients (breast cancer, paediatric haematological malignancies or melanoma) with different relationships with the patients (parents, children, spouses, siblings, and friends) were recruited at three specialised French centres and extensively interviewed. Caregivers' lives were altered in several domains: psychological well‐being, leisure and everyday activities, relationships with institutional caregivers, occupation and finances, relationships with family and friends, physical well‐being, and relationship with the patient. The relative importance of these domains varied mainly in association with the caregiver‐patient relationship. Multiple correspondence analysis identified two isolated clusters: children, and, most significantly, friends and siblings. The latter groups emphasised the repercussions on their psychological well‐being and their relationship with the patient, but were less willing to discuss the impact on their relationship with caregivers and on occupation, finances, leisure, and everyday activities. This study focuses on the caregiver's perspective and advocates the development of a short QoL core questionnaire. Additional modules should be cancer‐specific or dedicated to specifics of the caregiver‐patient relationship. |
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| Keywords: | cancer caregiver burden informal carers quality of life psychometry interviews |
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