Background: Caregivers of patients with Parkinson's Disease (PD) often provide important support in the preand postoperative phase of Deep Brain Stimulation (DBS). DBS-associated changes of patient... Show moreBackground: Caregivers of patients with Parkinson's Disease (PD) often provide important support in the preand postoperative phase of Deep Brain Stimulation (DBS). DBS-associated changes of patient-functioning may affect caregiver wellbeing and impact the support system. Factors influencing caregiver-wellbeing under these circumstances are incompletely known.Objective: to systematically review studies of sufficient methodological quality on the impact of DBS on caregivers of PD patients.Methods: using PRISMA guidelines, major databases were searched up to May 2020. Five subcategories were identified: Caregiver burden, Caregiver cognitive and psychiatric functioning, Caregiver Quality of Life (QoL), Marital Satisfaction/Conflicts, and Caregiver Satisfaction. Quality was assessed using an in-house checklist.Results: 293 studies were identified; 12 were ultimately included. Caregiver burden, psychiatric and cognitive functioning and QoL remained relatively unchanged. Results on marital satisfaction/conflicts were contrasting: an increase in marital conflicts despite improved relationship quality scores DBS. Caregiver satisfaction with surgery was low with 50-58% of caregivers being disappointed with DBS outcomes. Concerning caregiver related factors: a higher preoperative caregiver QoL, younger age, lower scores on psychiatric rating scales, and more favourable preoperative relationship quality scores, were associated with better caregiver wellbeing. A favourable patient-profile includes younger age and age-at-onset, shorter disease duration, lower medication requirements, and lower scores on psychiatric rating scales.Conclusion: Although most patient- and caregiver-related subdomains remained unchanged after DBS, dissatisfaction among caregivers and marital problems may constitute a large risk for a well-functioning patient-caregiver dyad. Early recognition of potential problem situations may improve post-DBS care for both patients and caregivers. Show less
The general aim of this thesis was to assess the effectiveness of a standardized psychosocial education program. The first studies of this thesis were aimed to assess the effectiveness of the... Show moreThe general aim of this thesis was to assess the effectiveness of a standardized psychosocial education program. The first studies of this thesis were aimed to assess the effectiveness of the Patient Education Program for Parkinson__s disease (PEPP), as the original program was directed at Parkinson__s disease. Thereafter, it was aimed to assess the program__s feasibility in other diseases. A second step in the thesis was an evaluation of the feasibility of the program adapted to a new disease-specific form for Huntington__s disease (PEP-HD). The third step was to evaluate a generic form of the program in a heterogeneous group of patients with chronic diseases and co-morbid psychiatric problems (PEP-CD). Show less
