Affiliations: Medical Psychology | Neuropsychology and Gender Studies & Center for Neuropsychological Diagnostics and Intervention (CeNDI), Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany
Correspondence to: Prof. Dr. Elke Kalbe, Medical Psychology | Neuropsychology and Gender Studies & Center for Neuropsychological Diagnostics and Intervention (CeNDI), Faculty of Medicine and University Hospital Cologne, University of Cologne, Kerpenerstr. 62, 50937 Cologne, Germany. Tel.: +49 221 478 96 244; Fax: +49 221 478 3420; E-mail: [email protected].
Abstract: Background: Despite a growing research literature on caregiver burden in progressive diseases (e.g., dementia), the experiences and needs of family members of patients with Parkinson′s disease (PD), especially of those who are not caring primarily, are underinvestigated. Furthermore, there is only limited evidence for interventions for PD relatives. Objective: The aim of this cross-sectional study was to assess the intervention needs of PD family members. Methods: 133 relatives of PD patients were asked about the essential topics and the appropriate format of a psychoeducational group intervention by means of a standardized questionnaire. Results: The sample consisted of 67 caregivers (CG) and 66 non-caregivers (nCG). CGs and nCGs were mainly female (75% vs. 64%) and patients’ spouses (97% vs. 59%). CGs were about 15 years older than nCGs. Both groups were considerably burdened by patients’ disease, and 84% of the CGs and 90% of the nCGs were convinced about the subjective benefit of a group intervention. The majority of the CGs rated stress management, coping with emotional distress, receiving social support, and different information modules as essential topics. In comparison, more than half of the nCGs voted for sharing experiences with other relatives, as well as for different information modules. Most individuals preferred two-hour sessions in the late afternoon (once or twice a week) with a maximum of ten participants. Conclusions: This study contributes to an increased understanding of PD families’ needs and might inform future studies concerning the development of needs-based and low-threshold support programs.
Keywords: Parkinson’s disease, caregivers, family, psychological stress, health
services, social support, surveys and questionnaires